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

 

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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.