Who we are

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 510 rare diseases patient organisations in over 48 countries.

Rare Disease Day

eNews

Find out the latest news from the rare disease community!

RareConnect

A social network of Rare Disease Communities led by NORD and EURORDIS in partnership with leading disease-specific patient groups. List of Rare Disease Communities:

• Alkaptonuria (AKU)
• Alternating Hemiplegia
• Atypical Hemolytic Uremic Syndrome
• Behçet's Syndrome
• CAPS
• CDG
• Cystinosis
• Dravet Syndrome
• Ehlers-Danlos Syndrome
• Epidermolysis Bullosa
• Familial Mediterranean Fever
• Glut1 DS
• Hereditary Spastic Paraplegia
• Waldenstrom macroglobulinemia
• Multiple Myeloma
• Moebius Syndrome
• Paraneoplastic Neurological Syndromes
• Von Hippel-Lindau

Rare disease blogs

• A disappointing consultation on the UK plan for rare diseases Wed, 07 Mar 2012 - I’ve just been reading through the consultation document for the UK plan on rare...
• Why Rare Disease Day is So Important Mon, 27 Feb 2012 - When EURORDIS first created Rare Disease Day in 2008, my first reaction was a bit...