HSPB8 Myopathy We are excited to announce that Cure HSPB8 is now a proud member of the Global Genes Alliance, marking a significant step in our mission to improve the lives of those affected by HSPB8 Myopathy. This ...

CureHSPB8 is a proud member of the Global Genes RARE Foundation Alliance! Together, we’re amplifying awareness and driving research for rare diseases like #HSPB8Myopathy. 💙

Learn more about our partnership here: curehspb8.org/blog/global-...

#RareDisease #PatientAdvocacy #CureHSPB8 #GlobalGenes"

Am I Only A Mother-Caregiver-Housemaid-Nurse-Secretary-Chauffeur? The Giving Tree- Motherhood Blues

Mothering-Caregiving a child with a rare disease or mental health challenge, or any serious medical issues is hard! How do you remember your own worth and your own oxygen mask?
open.substack.com/pub/pamelaal...

#raredisease #caregiving #themotherbattle #nord #globalgenes #mightyhumanscoach

Login • Instagram Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.

This is my #ZebraTail in honor of spreading awareness for #RareDiseaseDay happening this month.

#ShareYourStory and tag #GlobalGenes via social media.

[Video Description] Kendra in a room with a couple of black balloons and fake flowers behind her on a shelf.
www.instagram.com/reel/DFp7syD...

Global Genes just announced their RARE Advocacy Exchange!
Mar - Oct - 8 free, virtual sessions to empower #raredisease advocates, caregivers, and leaders.

💻 Free to attend.
📅 Year-round access.
✨ Open to everyone.

globalgenes.org/rare-advocac... #GlobalGenes #CareAboutRare #RareAdvocacyExchange