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1 to 29 of 29 threads (35 total posts)
  Thread Subject Replies Views Last Post Status
πŸ”Ž Dealing with the Diagnosis
0 0 6 days ago by Daniel Defabio
🎞 🌟 The most radically inclusive film I have ever seen
0 4 2 months ago by Daniel Defabio
πŸ•· πŸ•Έ SpiderMan comics get a new superhero with EDS 0 4 2 months ago by Daniel Defabio
🩺 πŸ¦“ Advice for the newly diagnosed with rare (podcast) 0 3 2 months ago by Daniel Defabio
πŸ‘πŸ» Like a post here
0 3 3 months ago by Daniel Defabio
Newly diagnosed and feeling scared or alone? This videos is for YOU!
0 3 3 months ago by Shelby Carney
🧠 🎬 September is STXBP1 awareness month - there's a film about it. Or two.
0 6 3 months ago by Daniel Defabio
✈ Airlines May Be Required To Accommodate Travelers In Their Wheelchairs β™Ώ 0 2 3 months ago by Anonymous Member
Poster Opportunity: Submit to present a poster at Global Genes 2022 Patient Advocacy Summit!
0 9 4 months ago by Shelby Carney
🏩 We need to ritualize chronic compassion. 0 7 6 months ago by Daniel Defabio
πŸŒ·πŸ’For Mothers Day - Being a mom while being Rare - film
0 5 7 months ago by Daniel Defabio
πŸ’§Healthy grieving
1 9 7 months ago by Daniel Defabio
🎀 πŸŽ₯ 🎬 You're Invited to the 2022 RAREly Told Stories filmmaking workshop
0 11 7 months ago by Daniel Defabio
πŸ”¦πŸ”ŽUndiagnosed Rare Disease Day April 29 - Searching for a Diagnosis - podcast
0 2 7 months ago by Daniel Defabio
😰 April 16 is stress awareness day - we've got some help for that stress
0 1 7 months ago by Daniel Defabio
🧠 πŸ”€ The surprising twist behind a rare neurological disorder -- episodic ataxia 6
0 3 8 months ago by Daniel Defabio
5 things we learned from Reena Kartha PhD in her Ask Me Anything 1 6 8 months ago by Daniel Defabio
πŸ‘©πŸ½β€βš•οΈπŸ‘©πŸΏβ€πŸ’ΌπŸ‘©πŸ»β€πŸ”¬πŸ™ŽπŸ½β€β™€οΈThe Global Genes Rare Disease Diversity, Equity and Inclusion Report: the challenges
0 11 8 months ago by Daniel Defabio
πŸ‡ΊπŸ‡¦ URGENT SUPPORT AND AID NEEDED FOR UKRAINIAN PATIENTS WITH RARE DISEASES
0 2 9 months ago by Daniel Defabio
πŸ‡ΊπŸ‡¦Β Β Rare disease kids suffer most in Russia's war on Ukraine
0 2 9 months ago by Daniel Defabio
Call for participants in Rare Compassion 2022
1 34 9 months ago by Daniel Defabio
The Game of Rare
1 15 10 months ago by Daniel Defabio
Accessible Vehicles Aren't Born, They're Made -- not affordably either 0 4 11 months ago by Daniel Defabio
How to lose a $1000+ donor
0 22 11 months ago by Daniel Defabio
Introduction to Genetic Disorders - cartoon explainer
1 38 one year ago by Daniel Defabio
Original post by Anonymous Member
What would you say is the biggest hurdle for patients to getting an accurate, meaningful genetic diagnosis?
0 8 one year ago by Anonymous Member
Popular Quick Polls
0 7 one year ago by Daniel Defabio
How WGS Ended Donovan's 6-Year Diagnostic Odyssey - video #GBDx
0 3 one year ago by Daniel Defabio
What's your (rare disease) super power?
1 12 one year ago by Anonymous Member