#RareRevolution

We’re honoured that Rare Revolution Magazine featured us in their latest edition, Rare neuromuscular. Huge thanks for recognising our journey & amplifying patient voices.

📰 Read articles👉https://bit.ly/From-The-Ground-Up

#RareRevolution #Neuroacanthocytosis #vps13Adisease #XKdisease

Putting you in the heart of the rare community - Koolen-de Vries Syndrome Foundation This week’s unmet needs and main asks of industry insights come from Ashley Point, president of Koolen-de Vries Syndrome Foundation.

The Koolen-de Vries Syndrome Foundation is uniting families and accelerating research for KdVS. First clinical trial in 2026! Learn more: rarerevolutionmagazine.com/rare-insider... #KdVS #RareDisease #PatientAdvocacy #RareRevolution #GeneticResearch

Jenny Ousbey of OVID Health Jenny Ousbey I believe that combining great patient advocacy, communications and public affairs is the key to being a Health Change Maker

Meet Jenny Ousbey, founder of OVID Health and a true Health Change Maker. Discover her inspiring journey in RARE Revolution insider: rarerevolutionmagazine.com/rare-insider... #WomenInRare #HealthChangeMakers #PatientAdvocacy #OVIDHealth #RareRevolution

🚀 Cure HSPB8 is officially launched! 🚀

We are the only patient advocacy group for HSPB8 Myopathy, a rare muscle-wasting disease. Our launch is featured in RARE Revolution Magazine!

🔗 Read more:
rarerevolutionmagazine.com/cure-hspb8-a...

#CureHSPB8 #RARERevolution #RareDisease #PatientAdvocacy