- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Promoting orphan drug development
- Orphan drug designation
- Improve the safety of your medicines
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- Latest orphan designations and/or marketing authorisations
- EURORDIS Round Table of Companies (ERTC)
- Living with a Rare Disease
- Services to Patients
- Training Resources
- News & Events
Concept paper: Rare Disease Clinical Trials (3rd ERTC Workshop)
A discussion of the Charter for Clinical Trials in Rare Diseases, developed by Eurordis, to ensure fruitful collaboration between clinical trial sponsors and patient organisations.
This concept paper was discussed during the 3rd Workshop of the Eurordis Round Table of Companies, held November 21st, 2005 in Barcelona.
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
We comply with the HONcode standard for health trustworthy information
We are grateful for the financial support of the EURORDIS website by :
