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Episodes
Tuesday Nov 21, 2023
Tuesday Nov 21, 2023
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. ---
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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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 us on LinkedIn as well at Dazzle4Rare.
Wednesday Nov 08, 2023
Wednesday Nov 08, 2023
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:
Epilepsy Sparks Insights podcast
The Disorder Channel website
NFED Advocacy Day
ERN Re-Connect
Rare Revolution Magazine interview with ERN Re-Connect
NIHR study ideas Education and Cognitive Development study
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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 us on LinkedIn as well at Dazzle4Rare.
Wednesday Oct 25, 2023
Wednesday Oct 25, 2023
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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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 us on LinkedIn as well at Dazzle4Rare.
Wednesday Oct 11, 2023
Wednesday Oct 11, 2023
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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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 us on LinkedIn as well at Dazzle4Rare.
Wednesday Sep 27, 2023
Wednesday Sep 27, 2023
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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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 us on LinkedIn as well at Dazzle4Rare.
Wednesday Sep 13, 2023
Wednesday Sep 13, 2023
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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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 us on LinkedIn as well at Dazzle4Rare.
Wednesday Aug 30, 2023
Wednesday Aug 30, 2023
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:
Awareness Days Calendar
https://autoinflammatorymonth.org/
alexTLC The Leukodystrophy Charity - Light Up Blue
EP22 with Dr. Nicholas Garnier
Pulmonary Fibrosis Awareness Month
STXBP1 Awareness Month
Thyroid Cancer NHS Connect
How to subscribe to a Dazzle4Rare calendar page
Article about Josiah and Makenzie Cabrera
NCBRS 5k Virtual Run
NCBRS Scientific Advisory Board LinkedIn
CRDN RareSumitt2023
PIP Disability assistance changes UK
Youngest Alzheimer's Case
CRISPR gene editing for EU crops (Nature article)
EU proposal on CRISPR-edited crops is welcome — but not enough (article reprint)
James Cameron on AI
CNN AI article
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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 us on LinkedIn as well at Dazzle4Rare.
Wednesday Aug 23, 2023
Wednesday Aug 23, 2023
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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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.
Wednesday Aug 02, 2023
Wednesday Aug 02, 2023
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.
Wednesday Jul 19, 2023
Wednesday Jul 19, 2023
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
----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.