top of page
Empowering young adults and their families within rare disease communities
Profile
Join date: Feb 26, 2020
Posts (197)
Feb 18, 2026 ∙ 1 min
My experience with spinal muscular atrophy: Orestes and friends
Orestis and his friends share his experiences with spinal muscular atrophy and the support he recieves from his friends
29
0
Feb 16, 2026 ∙ 2 min
Embracing my journey with spinal muscular atrophy: Zintle's Story
Zintle shares how the love and support of her family and friends has helped her to navigate life with a rare disease, and how important it has been for her to find ‘community’
146
0
1
Feb 11, 2026 ∙ 5 min
Hope is a tiny spark that can survive the darkest nights
Trapped inside his own body for many of his teenage years, Liam shares his personal story, which, despite the numerous battles he has faced at such a young age, is one of hope
93
0
4
RAREYouth
Admin
More actions
bottom of page