Rare Disease Communities helps patients to understand their condition, connect with other patients and provides tools for living with their diseases
Understand. Daily life with a rare disease.
- - Browse patient testimonies,
- - Share images & photos,
- - Find explanations,
- - Contact patient associations
Meet! Connect with other patients.
- - Start conversations,
- - Interact with others,
- - Ask questions,
- - Meet other patients or families
Learn. Learn more and find resources.
- - Contact expert patients,
- - Become informed,
- - Download,
- - Find information adapted to your needs
Visit a community
- Alkaptonuria (AKU)
- Alternating Hemiplegia
- Atypical Hemolytic Uremic Syn.
- Behçet’s Syndrome
- CAPS
- CDG
- Cystinosis
- Dravet syndrome
- Ehlers-Danlos syndrome (EDS)
- Epidermolysis Bullosa
- Familial Mediterranean Fever
- Glut1 DS
- Hereditary Spastic Paraplegia
- Waldenstrom macroglobulinemia
- Multiple Myeloma
- Moebius syndrome
- Von Hippel-Lindau
Custom Rare Disease Search Engine
No online community for your area of interest yet?
Use this search engine to search the following websites: eurordis.org,
orpha.net,
rarediseases.org
and rarediseases.info.nih.gov.
More info about these sites. You can also contact us to inform us of your interest in setting up future online patient communities.
Announcements
VII International Conference on Rare Diseases and Orphan Drugs (ICORD 2012)
Event, from 4 to 6 February 2012
A global meeting on international cooperation and public health policies focusing on research, diagnosis, development of and...
More info