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eNews

Find out the latest news from the rare disease community!


Now available in Russian!

 
 

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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)
  • Alström Syndrome
  • Alternating Hemiplegia
  • Atypical Hemolytic Uremic Syndrome
  • Amyloidosis
  • Behçet's Syndrome
  • CAPS
  • CDG
  • Coats disease
  • Cryoglobulinemia
  • Cystinosis
  • Dravet Syndrome
  • DysNet, Dysmelia - Limb Differences
  • Ehlers-Danlos Syndrome
  • Epidermolysis Bullosa
  • Erdheim-Chester Disease
  • Evans Syndrome
  • Familial Mediterranean Fever
  • Fibromuscular dysplasia
  • Glut1 DS
  • Hereditary Leiomyomatosis and Renal Cell Cancer
  • Hereditary Spastic Paraplegia
  • Idiopathic Pulmonary Fibrosis
  • Lipoprotein Lipase Deficiency
  • Mastocytosis and Mast Cell Activation Disorders community
  • Multiple Myeloma
  • Multiple system atrophy
  • Moebius Syndrome
  • Narcolepsy
  • Neuroacanthocytosis
  • Paraneoplastic Neurological Syndromes
  • Porphyria
  • Propionic Acidemia
  • Pulmonary Hypertension
  • Rett Syndrome
  • Trimethylaminuria
  • Von Hippel-Lindau
  • Waldenstrom macroglobulinemia
  • Whim syndrome
  • Alkaptonuria (AKU)
  • Alström Syndrome
  • Alternating Hemiplegia
  • Atypical Hemolytic Uremic Syndrome
  • Amyloidosis
  • Behçet's Syndrome
  • CAPS
  • CDG
  • Coats disease
  • Cryoglobulinemia
  • Cystinosis
  • Dravet Syndrome
  • DysNet, Dysmelia - Limb Differences
  • Ehlers-Danlos Syndrome
  • Epidermolysis Bullosa
  • Erdheim-Chester Disease
  • Evans Syndrome
  • Familial Mediterranean Fever
  • Fibromuscular dysplasia
  • Glut1 DS
  • Hereditary Leiomyomatosis and Renal Cell Cancer
  • Hereditary Spastic Paraplegia
  • Idiopathic Pulmonary Fibrosis
  • Lipoprotein Lipase Deficiency
  • Mastocytosis and Mast Cell Activation Disorders community
  • Multiple Myeloma
  • Multiple system atrophy
  • Moebius Syndrome
  • Narcolepsy
  • Neuroacanthocytosis
  • Paraneoplastic Neurological Syndromes
  • Porphyria
  • Propionic Acidemia
  • Pulmonary Hypertension
  • Rett Syndrome
  • Trimethylaminuria
  • Von Hippel-Lindau
  • Waldenstrom macroglobulinemia
  • Whim syndrome
 
 
 

Rare disease blogs

  • Developing a cure for Black Bone Disease: are we nearly there? Wed, 03 Apr 2013 - So here we are, at last: the culmination of 10 years of work. We’re launching the first...
  • On the occasion of the DIA President’s Award for Outstanding Achievement in World Health Tue, 05 Mar 2013 - Full acceptance speech of Yann Le Cam (Chief Executive Officer, EURORDIS) on the occasion...
  • Rare Disease Day 2013 Improving patients’ access to orphan medicinal products in Europe based on increased EU coordination Mon, 25 Feb 2013 - Paris, 21 February 2013 – A press conference to launch the sixth Rare Disease Day...
  • National strategy for rare diseases, how do we do now? EUROPLAN National Conference in Sweden Tue, 04 Dec 2012 - National strategy for rare diseases, how do we do now? That was the headline on Monday...
 

EURORDIS.org at a glance

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