- 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
Library
Information-sharing is a key priority for EURORDIS. By sharing information on rare disease subjects, EURORDIS empowers rare disease patients and raises awareness about research, health and social issues affecting their lives.
Position Papers
View all...A position paper describes an organisation's recommendations concerning a political issue, legislation or a European directive. In the context of its advocacy work in favour of rare diseases, EURORDIS regularly publishes position papers on rare disease and orphan drug topics.
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EURORDIS Round Table of Companies Workshop documents
View all...The EURORDIS Round Table of Companies (ERTC) holds regular workshops, bringing together stakeholders to discuss topics relevant to the development of orphan drugs and other treatments for rare diseases.
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
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