Signalise: a Dazzle4Rare Podcast

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

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

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.

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

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.

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

EP28: Dazzle4Rare2023 Past and Present Co-Hosts and Participants

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

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.

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

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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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.
 

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

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
https://www.dazzle4rare.net/awareness_days/
https://sjogrens.org/
https://aneinternational.org/acute-necrotizing-encephalopathy/
http://www.samaritans.org/about-samaritans/our-organisation/what-we-do/
http:// camraredisease.org
https:// socialhealthconnexion.com
https://www.fightingtherare.com/
resourceshub.rarebeacon.org
https://signalise.podbean.com/e/ep17-edira/
https://cypmedtech.nihr.ac.uk/2023/02/28/smart-suit-featured-on-bbc-news/
https://timesofindia.indiatimes.com/city/hyderabad/rare-disease-patients-in-hyd-trapped-in-funding-quagmire/articleshow/101093534.cms?from=mdr
https://www.nottinghampost.com/news/celebs-tv/mrs-hinch-reveals-three-year-8534938
 
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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.
 

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

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: 
Dr. Nicholas Garnier https://www.podbean.com/eas/pb-wyvsv-1414f86
https://www.dazzle4rare.net/add-calendar/
Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month - https://icpcare.org/
neonatalscreeningday.org
https://www.worldwithoutdisease.com/
https://globalmeet.webcasts.com/starthere.jsp?ei%3D1619066%26tp_key%3D3051ea4f62%26sti%3Dmjhemail&sa=D&source=calendar&usd=2&usg=AOvVaw28fJ5K5yn6puTyjRGp7fVh
https://mcri.zoom.us/webinar/register/7616855842897/WN_Fwaw6T_sTOCknWCfgT89VQ
www.gov.uk/government/news
https://www.swissinfo.ch/eng/multimedia/swiss-research-helps-paralysed-man-walk-again-using-implants-that-read-brainwaves/48561514#:~:text=A Dutch man who was,spinal cord to activate muscles
https://rightasrain.uwmedicine.org/well/health/early-MS-symptoms
https://globalgenes.org/event/rare-health-equity-forum/
https://globalgenes.org/event/rare-advocacy-summit/
 
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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.

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

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. 
 
PKU Info
2022 Canadian ALS Awareness
Beacon for Rare Events
Lee Reavey & Taylor Kane interview with Pam Cusick of RPV
CamRare Fun Run
Social Health Award Nominees
Rare Disease in America Survey
Hanson-Wade Conferences in June
Duchenne Care Conference (Online)
World without Disease tickets
4 Year-Old Paxton Participates in Dravet Drug Trial
FNIH Accelerates Medicines Partnership
The Death of a Metaverse
There are now 10k rare diseases
Biomarkers, Wearables, and Decentralised Trials
US Care Providers Increasingly Comfortable with D2C Genetic Tests
 
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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.