- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
EURORDIS Social Media
EURORDIS Social Media is a great way to stay connected and informed … and to add your voice to ongoing rare disease discussions.
facebook.com/eurordis
‘Like’ and ‘Follow’ the EURORDIS Facebook page. View the EURORDIS Facebook timeline, get the latest news and information, and participate in the ongoing conversation on current rare disease issues and events.
twitter.com/eurordis
Follow the latest EURORDIS news on Twitter (@eurordis). Re-tweet EURORDIS posts. Use the #raredisease hashtag when you tweet.
youtube.com/channel/UCS501UpoBg4CpYsU9EqAwMQ
Watch the latest EURORDIS videos on a variety of rare disease topics. Share your favorites.
flickr.com/photos/eurordis
Follow EURORDIS in photos! Check out the EURORDIS flickr photostreams and albums.
Google+
Follow EURORDIS on Google+. Stay up-to-date with what’s going on.
EURORDIS celebrates 20 years
2017 marks the 20th anniversary of EURORDIS-Rare Diseases Europe.
The rare disease community, including all rare disease patient organisations and their partners, can be deservedly proud of its achievements over the last two decades.
News
Find out the latest news from the rare disease community!
RareConnect
A social network of rare disease communities led by EURORDIS in partnership with leading disease-specific patient groups.
- Acanthamoeba keratitis (AK)
- Adrenal Insufficiency
- Alkaptonuria (AKU)
- Allan Herndon Dudley Syndrome MCT8
- Alström Syndrome
- Alternating Hemiplegia
- Atypical Hemolytic Uremic Syndrome
- Amyloidosis
- Aortic Dissection
- Apert Syndrome
- Arachnoiditis (ARC)
- Autoimmune lymphoproliferative syndrome (ALPS)
- Behcet's Syndrome
- Brown-Vialetto-Van Laere syndrome
- CAPS
- Castleman Disease
- CDG
- Choroideremia
- Chromosome 18 abnormalities
- Chronic Recurrent Multifocal Osteomyelitis (CRMO)
- CMTC
- Coats disease
- Cobb Syndrome
- Cone-rod dystrophies
- Cryoglobulinemia
- Cystinosis
- Dravet Syndrome
- DysNet, Dysmelia - Limb Differences
- Ectodermal Dysplasia
- EEC syndrome
- Ehlers-Danlos Syndrome
- Epidermolysis Bullosa
- Erdheim-Chester Disease
- Evans Syndrome
- Familial Mediterranean Fever
- Fetal AntiConvulsant Syndromes
- Fibromuscular dysplasia
- FOXP1
- Glut1 DS
- Hemiconvulsion-hemiplegia-epilepsy syndrome
- Hereditary Leiomyomatosis and Renal Cell Cancer
- Hereditary Sensory and Autonomic Neuropathies (HSAN)
- Hereditary Spastic Paraplegia
- Idiopathic Pulmonary Fibrosis
- Kallmann Syndrome
- Kleefstra syndrome (Ks)
- Leber hereditary optic neuropathy (LHON)
- Leigh Syndrome
- Lipodystrophy
- Lipoprotein Lipase Deficiency
- Liposarcoma
- Lowe Syndrome
- Lymphangiomatosis and Gorham's Disease (LGD)
- Lysosomal acid lipase deficiency (LALD)
- Malignant Infantile Osteopetrosis (MIOP)
- Mastocytosis
- Melkersson-Rosenthal Syndrome (MRS)
- Multiple Myeloma
- Multiple system atrophy
- Moebius Syndrome
- Moyamoya disease
- Multiple Endocrine Neoplasia (MEN)
- Myasthenia Gravis
- Myhre syndrome
- Narcolepsy
- NBIA
- Neuroacanthocytosis
- Neurofibromatosis type 1
- Neurofibromatosis type 2 and Schwannomatosis
- Neuromyelitis Optica (NMO)
- Niemann-Pick disease type C
- Paraneoplastic Neurological Syndromes
- Pemphigus and Pemphigoid
- Pityriasis Rubra Pilaris (PRP)
- Pitt Hopkins Syndrome
- Pontine Tegmental Cap Dysplasia
- Porphyria
- Primary Orthostatic Tremor (POT)
- Propionic Acidemia
- Pseudomyxoma Peritonei
- Pulmonary Hypertension
- Rett Syndrome
- Ring chromosome 20 syndrome
- Sanfilippo Syndrome (MPS III)
- Spontaneous Coronary Artery Dissection
- Stargardt Disease
- Stickler syndrome
- Stiff Person Syndrome
- TRAPS
- Trichorhinophalangeal syndrome
- Trimethylaminuria
- Undiagnosed diseases
- Urea Cycle Disorders
- Vasculitis
- Von Hippel-Lindau
- Waldenstrom macroglobulinemia
- Whim syndrome
- Williams Syndrome
- Acanthamoeba keratitis (AK)
- Adrenal Insufficiency
- Alkaptonuria (AKU)
- Allan Herndon Dudley Syndrome MCT8
- Alström Syndrome
- Alternating Hemiplegia
- Atypical Hemolytic Uremic Syndrome
- Amyloidosis
- Aortic Dissection
- Apert Syndrome
- Arachnoiditis (ARC)
- Autoimmune lymphoproliferative syndrome (ALPS)
- Behcet's Syndrome
- Brown-Vialetto-Van Laere syndrome
- CAPS
- Castleman Disease
- CDG
- Choroideremia
- Chromosome 18 abnormalities
- Chronic Recurrent Multifocal Osteomyelitis (CRMO)
- CMTC
- Coats disease
- Cobb Syndrome
- Cone-rod dystrophies
- Cryoglobulinemia
- Cystinosis
- Dravet Syndrome
- DysNet, Dysmelia - Limb Differences
- Ectodermal Dysplasia
- EEC syndrome
- Ehlers-Danlos Syndrome
- Epidermolysis Bullosa
- Erdheim-Chester Disease
- Evans Syndrome
- Familial Mediterranean Fever
- Fetal AntiConvulsant Syndromes
- Fibromuscular dysplasia
- FOXP1
- Glut1 DS
- Hemiconvulsion-hemiplegia-epilepsy syndrome
- Hereditary Leiomyomatosis and Renal Cell Cancer
- Hereditary Sensory and Autonomic Neuropathies (HSAN)
- Hereditary Spastic Paraplegia
- Idiopathic Pulmonary Fibrosis
- Kallmann Syndrome
- Kleefstra syndrome (Ks)
- Leigh Syndrome
- Leber hereditary optic neuropathy (LHON)
- Lipodystrophy
- Lipoprotein Lipase Deficiency
- Liposarcoma
- Lowe Syndrome
- Lymphangiomatosis and Gorham's Disease (LGD)
- Lysosomal acid lipase deficiency (LALD)
- Malignant Infantile Osteopetrosis (MIOP)
- Mastocytosis
- Melkersson-Rosenthal Syndrome (MRS)
- Multiple Myeloma
- Multiple system atrophy
- Moebius Syndrome
- Moyamoya disease
- Multiple Endocrine Neoplasia (MEN)
- Myasthenia Gravis
- Myhre syndrome
- Narcolepsy
- NBIA
- Neuroacanthocytosis
- Neurofibromatosis type 1
- Neurofibromatosis type 2 and Schwannomatosis
- Neuromyelitis Optica (NMO)
- Niemann-Pick disease type C
- Paraneoplastic Neurological Syndromes
- Pemphigus and Pemphigoid
- Pityriasis Rubra Pilaris (PRP)
- Pitt Hopkins Syndrome
- Pontine Tegmental Cap Dysplasia
- Porphyria
- Primary Orthostatic Tremor (POT)
- Propionic Acidemia
- Pseudomyxoma Peritonei
- Pulmonary Hypertension
- Rett Syndrome
- Ring chromosome 20 syndrome
- Sanfilippo Syndrome (MPS III)
- Spontaneous Coronary Artery Dissection
- Stargardt Disease
- Stickler syndrome
- Stiff Person Syndrome
- TRAPS
- Trichorhinophalangeal syndrome
- Trimethylaminuria
- Undiagnosed diseases
- Urea Cycle Disorders
- Vasculitis
- Von Hippel-Lindau
- Waldenstrom macroglobulinemia
- Whim syndrome
- Williams Syndrome
