Referring to related sites about rare diseases and disabilities is essential for staying up-to-date on important bills, acts, webinars, summits, and conferences. These resources help advocates, professionals, and families access the latest information, find support, and participate in shaping policies that directly impact their communities.
Organizations
- RDLA - rareadvocates.org
- MDA - mda.org
- NORD - rarediseases.org
- Patient Action Network - panfoundation.org
- Global Genes - globalgenes.org
- Everylife Foundation - everylifefoundation.org
- Patients Like Me -.patientslikeme.com
Podcasts
- Wheelchair Nerds
- Brain and Life
- Stronger Together -United Spinal’s podcast
- Quest podcast and blog
- SPF podcast on Spotify
