Signalise: a Dazzle4Rare Podcast

EP39 Rare and Relevant News Stories of 2023 TL;DR and Update

Dazzle4Rare — Fri, 05 Jan 2024 04:00:00 +0000

Welcome to the first 2024 episode of Signalise: a Dazzle4Rare podcast! Remember, we're now airing on Fridays. In this episode, we reflect on 2023's significant rare disease developments and look forward to more progress in 2024.

Bonus: 2024 Podcast Schedule Change

Dazzle4Rare — Wed, 03 Jan 2024 10:59:06 +0000

A quick "bonus" episode to drop to let you know that we'll be making some scheduling changes and 2024 will hopefully fingers crossed be a year of positive changes. But first, a big thanks to our faithful listeners for tuning in today and to this bi-monthly podcast. From this month, January 2024, we're shifting our podcast schedule to Fridays, keeping the podcast bi-monthly.

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EP37: Four Paediatric Holiday Cheer Stories and UHC Day 12th December

Kimberly Thomas-Tague — Wed, 06 Dec 2023 12:50:00 +0000

In this festive episode, Kimberly shares a little holiday spirit by with heart-warming stories of children with rare conditions and their families finding hope. She also shares International Universal Health Coverage Day brought to our community's attention by Dr. Eleonora Passeri of Rare Special Powers (IT).

1. International Universal Health Coverage Day: https://www.un.org/en/observances/universal-health-coverage-day
2. Emma's Dravet Syndrome Story:

https://www.cbsnews.com/philadelphia/news/dravet-syndrome-rare-disease-emma-watson

3. George's Lung Condition: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403838

4. George's Christmas Celebration:

https://www.coventrytelegraph.net/news/real-life/rugby-boys-first-christmas-without-28203691

5. Poppy's Musical Tribute: https://www.thetelegraphandargus.co.uk/news/23958762.bradford-teen-re-releases-song-memory-young-relatives

6. Buy a Copy of the Song: https://beyondrecords.uk/

7. Cure 4 The Kids' Challenge:

https://nevadabusiness.com/2023/11/celebrities-come-together-to-support-the-happy-xmas-shout-out-challenge

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EP36: Rare and Relevant TL;DR and an Update on ”Take Care of Maya”

Kimberly Thomas-Tague — Tue, 21 Nov 2023 11:45:00 +0000

Please note there are audio issues with this episode. I'll be working to upload an improved version later on release date.

In this, Kimberly shares a range of awareness events including International Epilepsy Awareness Day and World Pneumonia Day. A reminder for listeners that events like Bio-IT World Europe event are coming up and can be found on the Events Calendar. Be sure to check out conferences and events ahead of time so you don't miss out on tickets or early-bird discounts.

Also, for those interested in industry and clinical trials specifically, an e-book from Applied Clinical Trials has been published focusing on the challenges and opportunities in rare disease clinical research. She also summaries a significant lawsuit against the U.S. Department of Health and Human Services and provides a bittersweet update on the Netflix documentary "Take Care of Maya," shedding light on the unique struggles of rare disease families and providing care for sick children.

Finally, Kimberly touches on the story of Derya and it's paralells to Maya Kowalski's story. Themes such as forced hospitalization and navigating the healthcare system with a sick child are touched on so listener discretion is advised.

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Johns Hopkins Medical page on pneumonia https://www.hopkinsmedicine.org/health/conditions-and-diseases/pneumonia

Going the Distance: Insights into Rare Disease Clinical Studies, Trial Retention & Patient Experience

https://www.appliedclinicaltrialsonline.com/view/going-the-distance-insights-into-rare-disease-clinical-studies-trial-retention-patient-experience?utm_source=sfmc&utm_medium=email&utm_campaign=mktg_ebook

Global Genes Resources Guide

https://globalgenes.org/know-your-family-history/?utm_campaign=Nov-QNL&utm_medium=email&_hsmi=282849305&_hsenc=p2ANqtz--IM7dHCwVZkl2UEhckEJR3jg3xyfXGcqzphukDkbgeTF6X4EKnt9WX9qPFT6AHF8qg9sWiThjLTSR7fvipPAzwGc6sKA&utm_source=hubspot

HIV+Hepatitis Policy Institute Press Release

https://hivhep.org/wp-content/uploads/2023/02/HIV-Hep-DLC-DPAC-Litigation-Amicus-Briefs-press-release-2.10.23.pdf

Affordable Care Act Information

https://www.healthcare.gov/where-can-i-read-the-affordable-care-act

Take Care of Maya on Netflix

https://www.netflix.com/gb/title/81349305

[New York Times article on Take Care of Maya

https://www.nytimes.com/2023/11/10/us/take-care-of-maya-trial-damages-kowalski.html

Derya's Story

http://www.freederya.info/deryas-story/

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EP35: November TL;DR Feat. a Message for Menkes Awareness

Kimberly Thomas-Tague — Wed, 08 Nov 2023 04:00:00 +0000

In this episode, Kimberly shares several important awareness events happening in November, such as International Epilepsy Awareness Month, National CRPS Awareness Month, and Colour the World Orange Day for Complex Regional Pain Syndrome. It also highlights days like World NET Cancer Day, International 15q Day, and Smith-Magenis Syndrome Awareness Day, among others.

The podcast touches on news from Medics4Rare survey aiming to increase healthcare professional awareness of rare diseases. Dr. Lucy McKay's article in The Guardian addressing the need for improved approaches to rare diseases in healthcare education is also mentioned. Also discussed, the ERN ReConnect's efforts to translate clinical patient management flyer and much more.

Links mentioned in the episode are below:

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EP34: 2023 Halloween Special: Reel Struggles On and Off Screen for Rare Heros in Media, Feat. Original Spooky Jokes by Kimberly

Kimberly Thomas-Tague — Wed, 25 Oct 2023 04:00:00 +0100

Hold on to your pointy hats! In this episode, we share many more celebrities with rare or less commonly understood conditions in sci-fi and horror media. The discussion begins with Bruce Willis, who has recently been diagnosed with a rare form of dementia. The conversation extends to other celebrities and their amazing careers in entertainment over the years.

We break up some serious and inspiring stories with some original (bad) jokes by Kimberly based on The Shinning and more.

We cap things off with three fictional rare conditions from days of yore and spooky lore, some based in real science!

References:
- Staying In with Emily & Kumail:

https://podcasts.apple.com/gb/podcast/staying-in-with-emily-kumail/id1503412182

- Jeffrey Aronson: When I use a word… Lupus: https://blogs.bmj.com/bmj/2019/03/15/jeffrey-aronson-when-i-use-a-word-lupus/

- The truth about how infections spread:

https://health.clevelandclinic.org/zombie-virus/#:~:text=After%20COVID-19%2C%20the%20thought,truth%20about%20how%20infections%20spread.

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EP33: Kimberly Speedruns an October Rare and Relevant TL;DR Plus Network Good News

Dazzle4Rare — Wed, 11 Oct 2023 04:00:00 +0100

In the latest episode of Signalise, Kimberly performs a speedrun of your Rare and Relevant TL;DR and happy news stories from our D4R community.

We've also added new awareness events for October, including the National Disability Employment Awareness Month, and share some exciting news from our friends at GOPI3KS.

Resources

- October is National Disability Employment Awareness Month
[More info: DOl.gov]

- Genomics England has added a list of rare conditions for inclusion in their research study.
[www.genomicsengland.co.uk/news/genomics-england-announces-list-of-rare-conditions-to-be-included-in-world-leading-research-study]

- Lauren Pires from Mississauga is the first-ever Canadian recipient of the Invisible Disabilities Association’s “But You LOOK Good” Inspiration Award.

[https://www.modernmississauga.com/main/2023/9/27/mississauga-woman-named-first-ever-canadian-recipient-of-invisible-disabilities-association-award]

- Danielle from Daniellevates Instagram account

[https://www.instagram.com/p/Cx-lrE6sZs7]

- The Ehlers-Danlos Society announces its first cohort of the Centers & Networks of Excellence Program.

[www.ehlers-danlos.com/centers-networks-of-excellence-first-cohort-announced/]

- Lafora Disease now has unique ICD-10 Diagnostic Codes effective from October 1, 2023. [chelseashope.org/announcing-icd-10-codes-for-lafora-disease/]

- A study reveals that £60mn of public money was wasted on lost SEND tribunals in 2021-22. [Study: probonoeconomics.com/wasting-money-…]

- ACMCRN, LunaPBC, and Genetic Alliance
[www.acmcrn.org/patient-registry]

- NIHR publishes its new Outcomes Framework.
[www.nihr.ac.uk/about-us/our-impact/outcomes-framework.htm]

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EP32: September Rare and Relevant TL;DR and Returning Guest Daniel De Fabio on Global Genes Rare Week 2023

Kimberly Thomas-Tague — Wed, 27 Sep 2023 00:42:00 +0100

In this episode of Signalise, we dive into the world of rare and relevant events. From September's Mitochondrial Disease Awareness Month to October's myriad of awareness campaigns, we've got your calendar covered.

But that's not all!

Stay tuned as we feature a special guest, Daniel De Fabio from The Disorder Channel, who shares insights from Rare Week in San Diego. We had a long chat so only a small portion is featured in this week's episode. Stay tuned and subscribe to Signalise: a Dazzle4Rare podcast to hear more from our chat with Daniel.

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EP31: September Awareness Days, NORD Designates New Rare Disease Center, and Listener Voicemails

Kimberly Thomas-Tague — Wed, 13 Sep 2023 04:00:00 +0100

In this rare and relevant episode Kimberly delves into various awareness days and months in September. We also talk about upcoming webinars and conferences, share industry resources, and highlight the inspiring "Life After Diagnosis Day" follow-up available on The Disorder Channel.

Stay tuned for voicemails from our listeners, news about Weill Cornell Medicine and New York-Presbyterian Weill Cornell Medical Center, and San Diego-based Crinetics Pharmaceuticals' promising results in the development of an oral medication for acromegaly. So much to hear in one episode!

Links ⬇️

http://dazzle4rare.net/awareness_days](http://dazzle4rare.net/awareness_days
https://www.hopeforhh.org/get-involved/](https://www.hopeforhh.org/get-involved
https://rarediseases.org/rare-diseases/usher-syndrom](https://rarediseases.org/rare-diseases/usher-syndrome
https://www.childrenshospital.org/conditions/microvillus-inclusion-disease

https://rarediseases.org/event/nfed-advocacy-day/](https://rarediseases.org/event/nfed-advocacy-day
https://globalgenes.org/event/rare-health-equity-forum/](https://globalgenes.org/event/rare-health-equity-forum

https://www.hlth.com/2023event
https://mmpharmasciences.pathfactory.com/l/integrated-perspectives

https://news.weill.cornell.edu/news/2023/09/national-organization-for-rare-disorders-designates-weill-cornell-medicine-and-newyork

Reach Daniel De Fabio at daniel@rarediseasefilmfestival.com

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EP30: September’s Awareness Dates, Community Clips, and Global TL;DR News feat. Kerry Wong & Lee Reavey

Kimberly Thomas-Tague — Wed, 30 Aug 2023 01:00:00 +0100

In this episode, Kimberly discusses various awareness months and initiatives in the global rare community, beginning with a recap of International Ataxia Awareness Day and a message from Alan Thomas, a rare disease advocate, emphasizing the importance of collaboration and amplifying the rare disease voice.

We highlight awareness months in September, including International Autoinflammatory Awareness Month, Spinal Muscular Atrophy Awareness Month, Craniofacial Acceptance Month, International Hypothalamic Hamartoma Awareness Month, Leukodystrophy Awareness Month, National Immune Thrombocytopenic Purpura (ITP) Awareness Month, Newborn Screening Month, Pulmonary Fibrosis Awareness Month, STXBP1 Awareness Month, and Thyroid Cancer Awareness Month. The podcast also covers news related to rare diseases, such as investments in rare disease research, personal experiences of patients, updates in disability assistance, and medical advancements like early Alzheimer's diagnosis.

Resource Links:

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EP29: 7 Years of #Dazzle4Rare feat. Co-Hosts and Advocates from 2023

Kimberly Thomas-Tague — Wed, 23 Aug 2023 01:00:00 +0100

In this episode, Kimberly takes a closer look at the journey we’ve taken together over the last seven years with #Dazzle4Rare. From grassroots, this annual event has been a spark of hope uniting us across multiple continents over the years.

It sure has been a journey in all senses of the word. From hearing people greet each other in various languages in the past to seeing people participate from various countries around the world. It’s been really enlightening.

So let’s chat about some insights I’ve collected, scattered as they may be, over the last seven years.

Event Summary from 2016 to 2023 with insights and data from events

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EP28: Dazzle4Rare2023 Past and Present Co-Hosts and Participants

Kimberly Thomas-Tague — Wed, 02 Aug 2023 01:00:00 +0100

Join us in this special and reflective episode of Dazzle4Rare, where we take a journey through time with some remarkable individuals who have been at the heart of our mission. In anticipation of Dazzle4Rare 2023 this August, we've gathered past and present co-hosts who have been instrumental in making a difference: Sam Fillingham from PIP UK, Lee Reavey from NCBRS, David Ross from the Men's Mental Health Group, and Sean Gordon from Rare Funding Team and RAREVerse.

In this episode, we delve into the archives and bring you insightful snippets from Kimberly's conversations with each of these incredible co-hosts. Through laughter, poignant moments, and thought-provoking discussions, we highlight the invaluable perspectives they've shared on the podcast. Join us as we revisit the milestones, challenges, and triumphs that have shaped Dazzle4Rare and those who participate in the annual event.

Get ready to be inspired, moved, and motivated by the collective wisdom and experiences of our esteemed guests. As we pave the way for Dazzle4Rare 2023, we invite you to relive these meaningful exchanges and anticipate the exciting future we're building together in the rare community. Tune in and celebrate the power of unity, resilience, and advocacy in the world of rare conditions.

EP27: Empower and Impact Through July Awareness Months, Days, and More in Your Rare and Relevant TL:DR for mid-July 2023

Kimberly Thomas-Tague — Wed, 19 Jul 2023 04:00:00 +0100

Welcome to Signalise: a Dazzle4Rare podcast guest-hosted by Sam Fillingham, CEO of PIP-UK the Poland Syndrome Charity and Torie Robinson of the Epilepsy Sparks podcast.

In this episode, we Sam and Torie share events and news relevant to July 2023. We start with Fragile X Syndrome Awareness Month, Sarcoma Awareness Month, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjogren's Day, CTNNB1 Awareness, Legg-Calve-Perthes Awareness Day, and Jansen's Disease Awareness Day.

This month also marks Acute Necrotizing Encephalopathy (A.N.E) Awareness Day, a condition affecting young children, and the efforts of ANE International to support affected families.

On the non-rare front, we discuss Chronic Disease Day, advocating for better healthcare and healthier communities worldwide. In conferences, we remind listeners about the Health Union Annual Social Health Connexion Conference, a virtual event connecting global healthcare advocates on July 25-26, 2023.

We also share news about the Rare Youth Revolution's project "My Life, My Genetics," making genetic information accessible for young people. This project is driven by individuals living with various rare conditions, aiming to educate others about genetics and relationships.

Stay informed and engaged with these crucial events, conferences, and more in our global rare and associated communities. Many thanks to both Sam and Torie for helping with this week's episode.

Kimberly will be back for episode 28 as we get closer to Dazzle4Rare 2023!

What About Poland Syndrome?

Epilepsy Sparks

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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP26: Patient-Centric Opportunities in July for Advocacy, Support, and Awareness + Your TL;DR Wrap-up

Kimberly Thomas-Tague — Wed, 05 Jul 2023 13:36:35 +0100

In this episode, we dive into a range of events, discussing various awareness days taking place in July, and highlighting opportunities that focus on patient-centered initiatives for rare diseases.

We also discuss various awareness days in July, including Chronic Disease Day, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjögren's Day, #CTNNB1 Awareness, Legg-Calve-Perthes Awareness Day, Jansen’s Disease Awareness Day, and Acute Necrotizing Encephalopathy (ANE) Awareness Day. We highlight the finalists for the Social Health Awards and provide updates on the Xcelerate RARE challenge, Well-CAST Caregiver Support program, and Patient Office Hours.

Source links:

Fragile X Syndrome: fragilex.org
CDC Mental Health Awareness: cdc.gov
Sarcoma Awareness: surgicaloncology.co.uk
Chronic Disease Day: aha.org, ec.europa.eu
Glioblastoma Awareness: glioblastomafoundation.org
World Castleman Disease Day: castleman.org
Jansen’s Disease Awareness Day: thejansensfoundation.org
Rare Disease Clinical Trial Network: https://twitter.com/rare_trial
Social Health Awards Finalists: wegohealth.com
Well-CAST Caregiver Support: kelleherlab.weebly.com
Patient Office Hours: rarecommunity.org
Patient-Centricity in Clinical Trials: PMLive website, Nature journal website
Conferences: Social Health Network/Health Union Conexxion Conference, health-union.com

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EP25: Minority Mental Health Awareness Month, The Big Listen, Plus More of What’s Rare & Relevant in July 2023

Kimberly Thomas-Tague — Wed, 21 Jun 2023 04:00:00 +0100

Welcome to this week’s episode of Signalise: a Dazzle4Rare podcast. Bringing you the TL;DR on the the latest in the world of rare and associated conditions. This week, we'll be discussing what's happening in the realm of awareness, highlighting both rare and non-rare awareness events, spotlighting upcoming conferences in July, and a quick-fire roundup of global news in the rare and associated communities around the world. Let’s not forget your Dazzle4Rare 2023 info!

Strap in with your favourite beverage or snack and let’s do the darn thing!

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Links

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EP24: Happy Pride 2023 +Your June Rare and Relevant TL;DR

Kimberly Thomas-Tague — Wed, 07 Jun 2023 04:00:00 +0100

Happy Pride Month! Hey, welcome to another episode of Signalise and happy Pride Month 2023! In today's episode, we'll be giving you the rare and relevant TL;DR and LGBTQ+ Price as it intersects with the URCIID or undiagnosed, rare, chronically and invisibly ill, and Disability communities. We acknowledge that people hold a range of beliefs and ideologies, including those shaped by religion or political affiliations. Our intention is to create a safe and inclusive space for open dialogue and understanding, regardless of these affiliations, understanding everyone has unique and diverse beliefs. We invite everyone to join us on this journey of learning, empathy, and celebration of the rich diversity that makes our space so special. Pride Month is celebrated globally in June, honoring the LGBTQ+ community's history, milestones, and ongoing quest for equality in our global society. Later in the podcdast, we'll talk about how individuals with rare diseases navigate their diverse identities, find support within the LGBTQ+ community, and overcome unique challenges.

Join the celebration of experiences, resilience, and history but first, grab your beverage of choice and check out this episodes Rare and Relevant, your TL;DR for our global space!

Links Mentioned:

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EP 23 Bonus: Late May Rare and Relevant TL;DR News and Events

Kimberly Thomas-Tague — Wed, 24 May 2023 13:56:30 +0100

Welcome to this bonus episode of Rare and Relevant TL;DR!

Our regular episode this week, the week of the 24th of May 2023 features a chat with Dr. Nicola Garnier of Screen4Care. Go check that episode out to hear our discussion about new-born screening.

Now, whether this is your first or fifth episode, thanks for being here! It means a lot to me and the folks whose news, events, and guest appearances are featured in this podcast. If you’d like to share something with us or share a voice message, check the show notes for details on how to make contact.

Below are links to the information mentioned in this episode.

For folks who would like to check out Kimberly's Social Health Awards profile page, you can do so here:
https://www.wegohealth.com/KimberlyT11.

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EP22: Signalising Newborn Screening with Screen4Care EFPIA Lead, Dr. Nicolas Garnier

Kimberly Thomas-Tague — Wed, 24 May 2023 01:00:00 +0100

Welcome to this episode of Signalise: a Dazzle4Rare podcast. In this episode, we’re joined by Dr. Nicolas Garnier (French pronunciation: [ni.ko.la]) who’ll tell us a bit about himself and his work.

We’d planned to discuss Dr. Garnier’s work in new-born screening and the topic broadly but I couldn’t help myself; I wanted to get a more full understanding on his current project, Screen4Care where he is the consortium lead.

I think of Dazzle4Rare as a community service to our rare and associated communities so I’m glad that I dug in a little bit deeper during this chat and I hope you’ll enjoy our conversation. In fact, I’d like to have him back for a future follow-up episode so if you have questions you’d like Dr. Garnier to answer, email them over!

For those hoping to hear our TL;DR segment, Rare and Relevant, there will be a bonus episode today covering those news items. I hope you’ll listen to both but if you’re looking for some R and R, head over to that episode for what’s happening in our global community.

Links from Dr. Garnier

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5893317/

A few additional good resources:

https://www.eurordis.org/our-priorities/diagnosis/newborn-screening/ https://download2.eurordis.org/documents/pdf/eurordis_nbs_position_paper.pdf

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EP 21: May TL;DR and Dazzle4Rare 2023 Housekeeping

Kimberly Thomas-Tague — Wed, 10 May 2023 04:00:00 +0100

We're kicking off with a bang! May is jam-packed with event, awareness days, and news! Without further ado, let’s do the darn thing and get to Rare and Relevant, Your TL;DR!

First up, it's Huntington's Disease Awareness Month, Acute Disseminated Encephalomyelitis (ADEM) Awareness Month, ALS Awareness Month, Cystic Fibrosis Awareness Month, Ehlers-Danlos Syndrome and Hypermobility Syndrome Awareness Month, Ichthyosis Awareness Month, Myositis Awareness Month, Prader-Willi Syndrome Awareness Month, Progressive Supranuclear Palsy (PSP) Awareness Month, and PTEN Hamartoma Tumor Syndrome Awareness Month, all happening from May 1st to 30th.

Speaking of PTEN awareness month, back in November of 2022 I spoke with Cowden Syndrome / PTEN syndrome patient advocate and men’s mental health advocate, David Ross where he shared a little about the association between these conditions.

If you’d like to hear the rest of the episode after this one, the link will be in the show notes.

[https://signalise.podbean.com/e/ep8-david-ross/]

Stil in May, the 15th marks International Mucopolysaccharidosis Awareness Day and Tuberous Sclerosis Complex (TSC) Global Awareness Day. And don't forget CDG Awareness Day on May 16th, dedicated to raising awareness for a family of rare metabolic diseases that are often overlooked by the medical and scientific communities.

If that’s not enough awareness for you in May, we also have World Neurofibromatosis Awareness Day on May 17th, dedicated to raising awareness for this condition, causing tumors to grow on nerves throughout the body.

On May 19th, we have #Red4Veds, a social media campaign where people are encouraged to wear red and share photos on social media to raise awareness for Vascular Ehlers-Danlos Syndrome, a rare genetic disorder that affects the connective tissues in the body. vEDS carries with it a shortened life-span with most folks rarely surpassing their 40th birthday. If you have a family history of aortic dissection, tears or eruptions of other organs, please see your GP.

And for those in Wisconsin, USA mark your calendars for Rare Disease State Advocacy Day on May 17th from 3:30pm to midnight, organized by the Every Day Life Foundation. This is a day for Wisconsin residents impacted by rare diseases to come together, meet with state legislators, and share their stories to help advance the policy priorities of the rare disease community.

What about PS? Podcast

Did you know that friend of the podcast and first guest, Sam Fillingham, has started a Poland Syndrome podcast alongside host Giselle Barbosa?

The podcast is called “What about PS?” and will be hosted primarily by Giselle. She is a PIP-UK ambassador, an entrepreneur, and an athlete!

According to the press release, “ (The) podcast aims to shine a light on Poland Syndrome, a rare disease, and the lived experience of the Poland Syndrome community. Each episode, Giselle will explore inclusive and varied experiences of people living with Poland Syndrome with a variety of guests, from Paralympian Kim Daybell, Former Cricketer Lewis Hatchett, Australian Gymnast Clay Mason Stephens to medical professionals, bra companies and the most amazing members of our community. With engaging interviews, thought-provoking discussions, and the inclusive experience of the Poland Syndrome Community. The What about PS? podcast promises to be a must-listen for anyone curious about Poland Syndrome. Including the Poland Syndrome community, their friends and families, medical professionals and the rare disease community.”

[Insert Whatsapp clip from Sam if she sends one]

Whether you are affected personally by Poland Syndrome or not, I have no doubt the podcast will be interesting and engaging! You can find them wherever you get your podcasts, just search “What about PS?”

Very quickly, also in Poland Syndrome news, a little boy here in the UK named Charlie hosted a fun-run for Poland Syndrome. He’s a big fan of PIP-UK and the amazing things they do for kids like him. He raised over £844, roughly 1,560 US Dollars or 87392 Indian Rupies, for PIP UK. He reached 168% percent of his goal! Well done, Charlie and to the 32 folks who donated to his fun run for Poland Syndrome Support UK. A link will be in the show notes.

[https://www.justgiving.com/page/pip-uk-poland-syndrome-charity-charliesrun]

News Segment

All links will be in the show notes so make sure to subscribe on your podcasting app of choice or subscribe to our YouTube Podcast. You can find us by searching Dazzle4Rare on any of these platforms.

Sanford Research hosts the 13th Annual CoRDS Great Plains Rare Disease Summit

From the 24th April press release, “Sanford Research will host the Sanford CoRDS 13th Annual Great Plains Rare Disease Summit May 11-12 in Sioux Falls. This year’s event theme is, ‘Rare Neurodevelopmental Disorders.’”

The annual summit on rare diseases aims to bring together researchers and those affected by rare diseases to collaborate and educate people on advancements in the field of pediatric neurodevelopmental disorders. The event kicks off with opening remarks from Ashish Gupta, followed by presentations from rare disease advocates Amber Freed and Allison Bones. Thursday's sessions are open to patients, families, and those in the community impacted by rare diseases.

[source: https://news.sanfordhealth.org/news-release/sanford-research-to-host-great-plains-rare-disease-summit/]

Shout-out to Allison if you’re listening!

On to topic of CoRDS and Sanford Research

Sanford Health is a non-profit health care provider in the US. They’ve created a Rare Disease Registry to gather data on rare conditions. The registry aims to improve the understanding of rare diseases and accelerate research and treatment development. The registry is open to anyone in the US with a rare condition and is free to participate in. Participants can opt to share their medical history, symptoms, and genetic information to help researchers get a better understanding of their condition. The registry also includes a biobank where participants can donate samples for further research. So far, the registry has enrolled over 2,000 participants and is actively seeking more.

What’s a biobank, you may be asking?

A biobank in rare disease is a repository that stores biological samples (such as blood, tissue, urine, or saliva) and associated data from individuals with rare diseases. The purpose of a biobank is to provide a resource for researchers to study the underlying causes of rare diseases, develop new diagnostic tools and treatments, and ultimately improve patient outcomes.

Biobanks typically collect samples from individuals with rare diseases and their family members, as well as from healthy individuals for comparison. The samples are carefully stored and labeled, and the associated data (such as medical histories, genetic information, and demographic information) are recorded in a database.

Biobanks are critical for advancing rare disease research because they provide researchers with access to a large number of rare disease samples, which would be difficult to obtain on an individual basis. They also help to standardize sample collection and data recording, which makes it easier to compare data from different studies and identify commonalities and differences between rare diseases.

We’ll drop a link in the show notes for more info.

[source: https://research.sanfordhealth.org/rare-disease-regis...

EP20: Rare and Relevent TL;DR and a Personal Check-In with You

Kimberly Thomas-Tague — Wed, 26 Apr 2023 04:00:00 +0100

Welcome to Signalise: a Dazzle4Rare podcast. If this is your first or your fifth episode of Signalise, thanks for taking the time. You could be doing anything right now but you’re here and we appreciate that!

Every month is jam-packed with awareness days, events, and webinars. Wading through all the emails, alerts, and invitations from various organizations like Global Genes, Beacon, Genetic Alliance, and others can be a struggle. And let's not forget YOUR community - your wins, your good news!

We're introducing Rare and Relevant, your TL;DR for all things rare, associated, and noteworthy in a in a quick and easy format. If the term TL;DR is new to you, it stands for "Too Long; Didn't Read."

April is Sarcoidosis awareness month and there are some various national/international days as well. In this episode, Kerry Wong explains.

The Caring Hands Sarcoidosis organization is encouraging individuals to share their stories with the world by sending their pictures, names, and narratives to SarcoidNetwork1@gmail.com or sharing on social media with the hashtag #MakeItVisible.

Esophageal Cancer Awareness Month
https://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-adults/oesophageal-cancer
KIF1A Day
http://kfi1a.org
Hydrocephalus Association Facebook "Breaking Barriers Men’s Talk"
Hydocephalus Foundation in May "Bench to Bedside: How does a drug treatment get made?”
United Leukodystrophy Foundation event “Caregiver Online Support Group."
The Disability Badge Ban and Judy Dench
CRISPR Therapy Cured a Woman's Genetic Disease
Mom Diagnosed with End-Stage Uterine Cancer After Years of Misdiagnosis
Sims 4 Medical Wearables for Players
Samaritans Available 24 hours UK Tel. 116 123
Text SHOUT to 85258 from anywhere in the UK, anytime, about any type of crisis.
112 is the only number you can use to access the emergency services in all EU countries.
If you or someone you know is in crisis in the US, call 911 or go to the nearest emergency room. You can call 1-800-273-TALK (8255) to reach a 24-hour crisis center, or text MHA to 741741 at the Crisis Text Line. US residents only.
112 is the only number you can use to access the emergency services in all EU countries.

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EP19: Podcasting to Your People with Tips & Advice from Radio Veteran Pete Allen

Kimberly Thomas-Tague — Wed, 12 Apr 2023 01:00:00 +0100

Welcome to episode 19 of #Signalise: a #Dazzle4Rare podcast! Today, I'm excited to be joined by Pete Allen, a veteran radio and podcast producer with a wealth of experience in the industry. We'll be addressing some of the most common questions I get asked, like what a podcast is, what work goes into producing one, and whether it's possible to start a podcast with minimal resources or funds.

Pete has generously shared his insights on these topics and more, and you won't want to miss his expert advice. In fact, he even has a website where he shares his knowledge and expertise on all things podcasting. You can check out his website at https://carrotcruncher.com/ and see his recommended podcast kit at https://carrotcruncher.com/Recommended_Kit.html. If you have any questions, feel free to email Pete directly at pete.allen@carrotcruncher.com, or connect with him on LinkedIn at https://www.linkedin.com/in/peteallen/.

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EP18: Making More Accessible Content 5 Tips and Bonus Tricks for More Accessible Content

Kimberly Thomas-Tague — Wed, 29 Mar 2023 01:41:00 +0100

In today’s episode of Signalise: a Dazzle4rare Podcast, I’m taking us down a familiar path that is well-known but perhaps less traveled – creating accessible content online.

If it's not the top of your mind, it's not on the top of your list. This episode breaks down the guilt and shame we may feel when created content online that isn't always accessible, even with the bare minimums covered. No shade. No shame. Just an open, honest conversation starter about creating website content and other digital or print content that helps more people access your community, as well as the education and support you have to offer.

Below are some of the links to information mention in this week's episode.

Remember, while these tools can be helpful in identifying accessibility issues, they do not replace a comprehensive accessibility audit conducted by an experienced accessibility consultant.

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EP17: Traveling the Road to EDIRA with Dr. Sondra Butterworth and Sam Fillingham

Kimberly Thomas-Tague — Wed, 15 Mar 2023 01:00:00 +0000

Welcome to this episode of Signalise: a Dazzle4Rare podcast. Today, we’re traveling the road to EDIRA.

While EDIRA may sound like a fantasy realm, a golden landscape where triumph, resilience, and hope hang in the air, it is very much real.

In the face of adversity, rare disease communities continue to perservere, despite circumstances in which their voices are not always heard or valued. Communities have been looking for a way, a place, to find Equality and Diversity in rare disease spaces with research and clinical trial participation as well as in drug development, having a place at the proverbial table. While big stakeholders across healthcare centered spaces are starting to understand the importance of patient inclusion, there is still a disparity between what is logically known about including patients versus what they are doing to ensure unique patient perspectives are included.

As Sam so aptly said during the Rare Disease Day live stream, "We are the experts in our own conditions." EDIRA is a step towards including patients as experts in their own conditions, and it is a step towards a brighter, more inclusive future.

Episode resource links:

Spectrum 10k Consultation
Update: Statement on NHLBI decision to resume participant enrollment in the Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for Sickle Cell Disease
Full "Road to EDIRA" Live Stream Webinar on Rare Disease Day
EDIRA Event Brite tickets
Sponsor: Costello Medical "Giving Back" programme
Sponsor: COUCH Health
Speaker: Dr. Natasha Radcliffe
In-Conversation with Elizabeth Davenport
In-Conversation with Hazel Kim from Chinese Autism UK
Event Ambassador: Glenn Webbe

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EP16 -Looking back at Rare Disease Days past, Community News, and Awareness Days in March

Dazzle4Rare — Tue, 28 Feb 2023 05:00:00 +0000

Finally, the day many of us have been waiting for … the 28th of February. Rare Disease Day.

We all think we know all about Rare Disease Day but let’s take a trip in the Way Back Machine and look at this days modest beginnings.

NCBRS

https://www.facebook.com/ncbrsworldwidefoundation/posts/pfbid02cpbnwheAXvtAw2mjV4ffhVg6Au7ML56emwDAiSQVgSDpUV7CXsGWgPByXE6r8brMl#

Willis Family Statement
https://www.theaftd.org/mnlstatement23/

"End of Amazon Smile [...]" Global Genes Letter
https://globalgenes.org/blog/end-of-amazonsmile-program-impacts-non-profits/?utm_source=twitter&utm_medium=social&utm_campaign=amazonsm

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Bonus EP2: Chatting about Stiff Person Syndrome with Guest, Lauren McDermott

Dazzle4Rare — Tue, 28 Feb 2023 04:48:00 +0000

As promised in EP15 we present this full unedited audio of Kimberly's informal chat with Lauren McDermott, Stiff Person Syndrome "Lone Wolf" advocate.

Preserved in this chat are moments of brain fog which we both felt was important to share with others. The chat also captures the bouncing around that can often happen with chronic illness and brain fog, revealing what chats like this can sound like without the fancy editing.

Fellow "Lone Wolf" advocate Lauren McDermott joins us to talk about her atypical SPS diagnosis and a bit about SPS.

SPS on NORD - https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome#:~:text=Stiff-person syndrome (SPS),can set off muscle spasms

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EP15: Rare Disease Day Events and Celine Dion’s Ultra-Rare Diagnosis with Guest Lauren McDermott

Kimberly Thomas-Tague — Wed, 15 Feb 2023 01:51:00 +0000

On this episode of Signalise: a Dazzle4Rare podcast, we’re helping you get ready for Rare Disease Day 2023 with events, news, and guest Lauren McDermott.

According to RareDiseaseDay.org, you can contribute to this global action and awareness day are, “By Sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.”

We recommend reaching out to your local representative this day. You can find links to representatives and members of parliament below for North America, the UK, and India.

USA - https://www.house.gov/representatives/find-your-representative

UK - https://members.parliament.uk/FindYourMP

Canada - https://www.ourcommons.ca/members/en

India - https://www.india.gov.in/my-government/whos-who/members-parliament

To find out more about the upcoming EDIRA conference, head to http://rareqol.co.uk or follow Dr. Sondra Butterworth via Linkedin.

Kerry Wong from the US Sarcoidosis community, among others, has big news to share with all our rare communities on her Twitter or Facebook page on the 28th in time for RDD 2023.

For all the awareness days mentioned in this episode, head over to the Rare Disease Awareness Days calendar. For the events, head to the Community Events calendar. Both are available on iOS, Android, and most devices in your calendar application.

As many of you will already have heard, beloved French Canadian singer Celine Dion announced her rare disease diagnosis in December 2022. Stiff Person Syndrome (SPS) patient and "Lone Wolf" advocate Lauren McDermott joins us to talk about her atypical SPS diagnosis.

To learn more about SPS, you can find detailed information on the National Institutes of Health website.

Look for a bonus episode later with Lauren where we casually chat about her diagnosis and her journey with SPS.

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EP14: Rare and Associated Community Love Letters, News, and More

Kimberly Thomas-Tague — Wed, 01 Feb 2023 01:45:00 +0000

On this Valentine’s episode of Signalise: a #Dazzle4Rare podcast, we’ve got news for Amazon Smile charities, we’ve got a lot of awareness days in the diary, and we’ve got your love letters.

If you don't have pen and paper handy, not to worry! All the dates mentioned are in the #Dazzle4Rare International Awareness Days calendar.

Links Mentioned:

Genetic and Rare Diseases (GARD) - Marfan Syndrome
SCN8A Syndrome
Epilepsy Sparks Insights Podcast with Torie Robinson
Rare Disease Day 28th February

You can read the New York Times article by clicking the title," Amazon Axes ‘Smile’ Charity Program, Citing Limited Impact."

Love Letters

David Ross - Rare Disease Men's Mental Health Advocate & Group Leader
Melissa Van Houten - Gastroparesis: Fighting for Change
Heidi Edwards - President and Founder at Sisters’ Hope Foundation
Susan Foley - Executive Director of HESA and Co-Founder
Lee Reavey - NCBRS Foundation
Sue Routledge - Pitt-Hoppkins UK
Dr Sondra Butterworth PhD., MSc., PGCE., GMBPS. Community Health Psychologist
Lori Verton - ACMCRN President, Founding Director
Alan Thomas - Ataxia and Me

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EP13: Mixed data methods in rare disease and how patient narratives can impact the diagnostic journey with Dr Sondra Butterworth

Kimberly Thomas-Tague — Wed, 18 Jan 2023 01:00:00 +0000

On today’s episode of Signalise: a Dazzle4Rare podcast, we’re joined by Dr Sondra Butterworth PhD, a community health psychologist and so much more. Since discovering she was a carrier of a rare gene, she began to examine the patient journey and how patient narratives can impact the diagnostic journey. Through her work with RareQol they released Whose Voice is it Anyway, a rare community networking campaign. She has collaborated with Medics4RareDisease and participated in many rare disease consultations and other collaborative projects.

You can find Dr Butterworth on LinkedIn and through the RareQol website. You can reach out to the team at RareQol at info@rareqol.co.uk.

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EP12 - How algorithms and platform acquisitions are affecting rare disease social media right now

Kimberly Thomas-Tague — Wed, 04 Jan 2023 01:00:00 +0000

If there is something you are curious about, passionate about, or angry about, there’s a platform for that. Platforms engulfed in negativity aren't great but these platforms have also given a louder voice to rare and associated communities that exist online.

In this episode, Kimberly discusses how rare disease communities have thrived on social media platforms. She contrasts the past and present of today's rapidly changing social media environment. How will these changes to algorithms and platform acquisitions affect #URCIID communities?

Listen to this week's episode to find out more.

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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter . You can find host Kimberly on LinkedIn at @kattague.

EP11: A Very Signalise Holiday Episode with Host Kimberly Thomas-Tague

Kimberly Thomas-Tague — Wed, 21 Dec 2022 01:00:00 +0000

Welcome to this final full-length episode of Signalise: a #Dazzle4Rare podcast, in 2022. In this episode, Kimberly recalls the start of #Dazzle4Rare and the wonderful folks who helped make that first year happen. She also shares festive holiday tips for enjoying this season in the ways that are most accessible to you, talks about Tiny Tim's medical condition, drops a few silly festive jokes, and more.

From all of us at the Signalise family, we thank you for your support in helping us support rare disease patients and organisations by sharing their news, events, and personal stories. If you'd like to continue to support what we do, please share this episode with a family member or friend! Even better, share on your social media and tag us!

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EP10: Menkes Dad Daniel DeFabio on grief in the Marvel Universe and ours as well as the art of storytelling

Kimberly Thomas-Tague — Wed, 14 Dec 2022 01:00:00 +0000

Content Warning:

Some parts of this discussion may be distressing or trigger difficult thoughts and feelings for some listeners. If you are experiencing grief, sadness, or struggling to cope, help is available. Please reach out to a medical or mental health provider or speak to someone by phone by dialling at 116 123 for the Samaritans UK or dialling 988 in the US mental health support.

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Daniel DeFabio is a Menkes disease Dad, rare disease advocate, and Producer for DISORDER: The Rare Disease Film Festival, among so many other projects! He has a long history of engaging audiences with online content creation. In this episode, we touch on grief, its appearance in the Marvel Universe, and the art of rare disease storytelling. Signalise listeners are also treated with a big announcement for a new show launching in December 2022 on The Disorder Collection channel.

Since his entrance into rare disease life with the birth of his son in 2008, Daniel created the Rare Disease Film Festival with Bo Bigelow and co-hosts Once Upon a Gene TV with host Effie Parks and co-host Bo Bigelow. You can find more content on rare disease parenting, the loss of a child, and more below.

You can learn more about Daniel and his projects on Facebook, Instagram, or find Daniel on LinkedIn.

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Blog Post:

“The evidence of my son’s impact”

Daniel's Disorder Collection Profile: https://www.thedisordercollection.com/danieldefabiospeaker

Once Upon a Gene TV EP5

https://youtu.be/7DkLH8_hu5o

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EP9 - How rare communities will use emergent ”Metaverse” concept for social media and patient engagement with guest Sean Gordon

Kimberly Thomas-Tague — Wed, 30 Nov 2022 01:00:00 +0000

Sean Gordon is the Founder and Chief Volunteer Officer of RareFundingTeam. Sean was diagnosed with an adult onset condition, Adult Polygulcosan Body Disease.

After this life-changing rare disease diagnosis, Sean founded Rare Funding Team with the goal of bringing together communications professionals and rare disease organizations on a pro-bono basis.

Sean has been developing a concept around a "Metaverse" or "Web3" and how it could benefit Rare Disease patient communities.

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RRM Article

https://rarerevolutionmagazine.com/merging-the-metaverse-and-the-rare-disease-community-join-the-conversation/

Contact Sean: https://www.rarefundingteam.com/contact

Sean Gordon's social media

Linkedin - https://www.linkedin.com/in/sean-gordon-a510609/

Facebook - https://www.facebook.com/Rarefundingteam
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter . You can find host Kimberly on LinkedIn at @kattague.

EP8 - David Ross, Men’s Mental Health Advocate in Rare Disease

Kimberly Thomas-Tague — Wed, 16 Nov 2022 01:00:00 +0000

David Ross is a patient advocate for Rare Disease Mental Health, a virtual chat support group for men with rare conditions to talk about their mental health. This is a safe space for men to talk about their ups and downs and support one another.

David's social media:

LinkedIn - https://www.linkedin.com/in/david-ross-844965171/

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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter . You can find host Kimberly on LinkedIn at @kattague.

EP7 - Programme notes, community news, and NET Cancers awareness

Kimberly Thomas-Tague — Wed, 09 Nov 2022 01:00:00 +0000

Now that we are in our second month of Signalise: a Dazzle4Rare podcast and a few episodes under our belt, we will be moving to a bi-monthly schedule. This means today’s episode is short, and our next episode will be a full-length one starting .

Join the rare disease men's mental health virtual meetings with it David Ross. For details connect with him on LinkedIn or Twitter at MaleZebra2020.

Learn about World NET Cancers this month by visiting this website.

⬇️

https://www.neuroendocrinecancer.org.uk/.

If you're interested in where rare disease communities online may be heading in the future, check out Sean Gordon's quarterly article in RareTech for Rare Revolution Magazine here.

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EP6 - How physical features can help point to a rare genetic condition

Kimberly Thomas-Tague — Wed, 02 Nov 2022 01:00:00 +0000

We're entering the month of November with seven rare disease awareness days. In this episode, we're also calling back to our conversation with Lee Reavey of NCBRS on the topic of morphology, or in a medical context, the study of features in genetic conditions. In the context of our discussion, morphology or the physical examination of features led the two visiting consultants at Great Ormond Street Hospital to make an NCBRS diagnosis. This type of examination has helped medical professionals identify genetic conditions for decades, if not centuries.

Disclaimer:

I am not a medical professional. Nothing discussed in this episode should be taken as definitive or comprehensive information. No content presented here is to be considered advice or diagnostic. The purpose of this episode is to open a dialog to discussion, education, and awareness. If you have any concerns about yourself or a loved one, speak to your medical practitioner immediately.

EP4 - Lee Reavey, Co-Founder and CEO of the NCBRS Worldwide Foundation
https://signalise.podbean.com/e/lee-reavey-ncbrs-worldwide-foundation/

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EP5 - Sci-Fi and Horror Heroes, spooky jokes, problematic depictions of rare disease and more

Kimberly Thomas-Tague — Wed, 26 Oct 2022 01:00:00 +0100

This episode is rated G for all the ghouls and goblins!

Finally! If you’re like me, you love Spooky Season! Whether its the pumpkin spice lattes (and everything else), the fun decorations, (or as I say in our home “year-round décor”), or the chance to dress up; it’s a great time to express your creativity.

In this episode of Signalise: a #Dazzle4Rare podcast, we’re going to cover a few subjects: actors with rare conditions in the sci-fi and horror genres, problematic films depicting rare conditions, some tips for your trick-or-treat journey, and some corny jokes sprinkled in!

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EP4 - Lee Reavey, Co-Founder and CEO of the NCBRS Worldwide Foundation

Dazzle4Rare — Wed, 19 Oct 2022 01:31:00 +0100

Lee Reavey is the Co-Founder and CEO of the NCBRS Worldwide Foundation. He co-founded NCBRS Parent Support Group in May 2010. Lee’s son received a diagnosis Nicolaides-Baraitser Syndrome as only the seventh known case of NCBRS in the world. At that time, there was very little, if any, information available online.

NCBRS is related to a gene variant of SMARCA2 but more research is needed.

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NCBRS website - https://bit.ly/3S5S8uY

NCBR patient registry - https://bit.ly/3D7FJ5g

Facebook - https://www.facebook.com/ncbrsworldwidefoundation

Twitter - https://twitter.com/ncbrsfoundation

Instagram - https://www.instagram.com/ncbrs/

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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

EP3 - David Rose, an Ultra-Rare patient advocate and Business Development at Rare Revolution Magazine

Kimberly Thomas-Tague — Wed, 12 Oct 2022 01:00:00 +0100

David shares a little about his conditions, Occipital Horn syndrome and Postural Orthostatic Tachycardia Syndrome (PoTS). He shares the early historical link between Ehlers-Danlos syndromes and Occipital Horn in the link to connective tissue and iron storage disorders. We also dive into condition overlap, rare and not-so-rare conditions, and more.

Also, can rare and comorbid conditions work together to help increase awareness?

Listen to hear more about how social media helps make these critical connections.

To find out more about the Rare Youth Revolution internships, contact Rare Revolution and direct your inquiry to Chelsea. You can find their LinkedIn page below.

Rare Revolution on LinkedIn

EP2 - Sam FIllingham, CEO and Founder at Poland Syndrome Support UK

Kimberly Thomas-Tague — Wed, 05 Oct 2022 01:02:00 +0100

Welcome to Signalise: a Dazzle4Rare podcast. Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories.

For our inaugural guest episode, we're glad to welcome friend, advocate, and parent, Sam Fillingham. Sam is the Founder of Poland Syndrome Support UK. According to their website pip-uk.org, "many children are born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community."

Sam shares a bit about Poland syndrome, how they got started, and their new patient registry, changing the lives of patients far and wide.

Join the register ➡️ https://pip-uk.org/poland-syndrome-community-register
Learn about the clinic ➡️ https://pip-uk.org/poland-syndrome-clinic
Case study ➡️ https://bit.ly/3EmA3Wb

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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow Signalise news on @Dazzle4Rare on Facebook, Instagram, Twitter, and Pinterest. You can find host Kimberly on LinkedIn at @kattague.

EP1 - Welcome to Signalise: a #Dazzle4Rare podcast

Kimberly Thomas-Tague — Wed, 05 Oct 2022 01:00:00 +0100

Welcome to Signalise: a Dazzle4Rare podcast. Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories.

This episode introduces your host, Kimberly, and her mission to signal-boost undiagnosed and rare stories.

Kimberly touches on her own experience with Ehlers-Danlos syndrome in this episode, find out more about the Ehlers-Danlos syndromes here: https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/

Don't miss an episode of Signalise! Be sure to FOLLOW or SUBSCRIBE via your podcast app of choice. You can also follow Signalise news on @Dazzle4Rare on Facebook, Instagram, Twitter, and Pinterest. You can find Kimberly on LinkedIn at @kattague.

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More about Dazzle4Rare

#Dazzle4Rare is a cross-community undiagnosed and rare disease awareness week. Unlike most awareness events, this week is meant to enable rare disease communities of all sizes to share messages for one another, signal boosting the messages to reach a wider audience. The base concept is simple – when you share for another community, they can reach your audience who may benefit from hearing their message or learning more about that. In doing so, others will share YOUR message enabling you to reach an audience you would not normally.

Official website: https://www.dazzle4rare.net/

Signalise : a Dazzle4Rare Podcast - The Trailer

Kimberly Thomas-Tague — Sat, 17 Sep 2022 22:55:00 +0100

Welcome to Signalise: a podcast from Dazzle4Rare.

Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories.

In this brief trailer, Kimberly talks about what you can expect from Signalise. You'll also hear why Signalise, and Dazzle4Rare, have been life-changing for Kimberly and many others Worldwide.

To learn more about the Ehlers-Danlos syndrome (EDS), one of which Kimberly survives and thrives with, visit the National Organisation for Rare Disease (NORD) for info on the 13 distinct types of EDS.

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More about Dazzle4Rare

Official website: https://www.dazzle4rare.net/