Wait, How Do You Spell That? A Rare Disease Podcast
Health & Fitness
Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the EU Council Presidency's focus on rare disease for 2022-2022 here. And keep up with Anežka's YouTube Channel here.
When your son has the sixth SYNGAP-1 diagnosis in the world- Ft. Monica Weldon from Bridge the Gap
You're not failing at self-care: staying okay-ish in a pandemic
Not just carriers ft. Taylor Kane from Remember the Girls
PKU is NOT like that time I was vegan!
Adulthood is hard! Ft. Anna from Our Odyssey (Live Recording)
Share your story! But only if you want to.
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