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Find out the latest news from the rare disease community!

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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...
• Rare Disease Day: Building momentum towards international collaboration. Mon, 27 Feb 2012 - As we celebrate the International Rare Disease Day 2012 we are turning rare diseases into...
• NORD Supports TREAT Act Introduced by Senator Hagan Thu, 16 Feb 2012 - U.S. Senator Kay Hagan (NC) has introduced proposed legislation that NORD believes could...