- 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
What We Do
EURORDIS aims at improving the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and drug development, networking patient groups, raising awareness and other actions designed to fight against the impact of rare diseases on the lives of patients and family.
Advocating for patients
EURORDIS represents 30 million patients affected by 4000 distinct rare diseases and advocates within the European Commission and other European...
Health Policy & Healthcare Services
Promoting Rare Disease Health Policy Development EURORDIS calls for the adoption and actively supports...
Research, Drugs & Therapies
Shaping research policy EURORDIS contributes to the promotion and...
Information & Networking
Community building EURORDIS seeks to empower rare disease patients by enabling them to share and...
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
- Lowe Syndrome
- 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
- Lowe Syndrome
- 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 :
