Event Information:
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Wed22Feb2017Thu23Feb2017
2nd Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies
All information and registration here
Upcoming
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Mon23Sep2019Fri27Sep2019
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Mon23Sep2019Sat28Sep2019
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Mon23Sep2019Sun29Sep2019
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Rare diseases covered by VASCERN
Anhidrotic ectodermal dysplasia-immunodeficiency-osteopetrosis-lymphedema syndrome
Cholestasis-lymphedema syndrome
Dahlberg-Borer-Newcomer syndrome
Deafness-lymphedema-leukemia syndrome
Hypotrichosis-lymphedema-telangiectasia-renal defect syndrome
Lymphedema-atrial septal defects-facial changes syndrome
Lymphedema-cerebral arteriovenous anomaly syndrome
Lymphedema-distichiasis syndrome
Lymphedema-posterior choanal atresia syndrome
Macrothrombocytopenia-lymphedema-developmental delay-facial dysmorphism-camptodactyly syndrome
Megalencephaly-capillary malformation-polymicrogyria syndrome
Microcephaly-lymphedema-chorioretinopathy syndrome
Non-hereditary late-onset primary lymphedema
Noonan syndrome and Noonan-related syndrome
Noonan syndrome with multiple lentigines
Noonan syndrome-like disorder with juvenile myelomonocytic leukemia
Noonan syndrome-like disorder with loose anagen hair
Primary lymphedema with associated anomalies
Segmental progressive overgrowth syndrome with fibroadipose hyperplasia
Blue Rubber Bleb Nevus syndrome
Capillaro-lymphatic malformation
Capillaro-lymphatic-venous malformation
Capillaro-lymphatic-venous malformation with hypertrophy
Capillaro-lymphatic-venous malformation with hypotrophy
Capillary malformation-arteriovenous malformation
Cerebral arteriovenous malformation
Cutis Marmorata Telangiectatica Congenita
Diffuse capillary malformation with hypertrophy
Diffuse neonatal hemangiomatosis
Facial arteriovenous malformation
Familial cerebral cavernous malformation
Infantile hemangioma of rare localization
Kaposiform hemangioendothelioma
Klippel-Trénaunay-Weber syndrome
Lymphatico-venous malformation
Macrocephaly-capillary malformation
Macrocystic lymphatic malformation
Microcystic lymphatic malformation
Mixed cystic lymphatic malformation
Mucocutaneous venous malformation
Multifocal sporadic venous malformation
Non-involuting congenital hemangioma
Papillary intralymphatic angioendothelioma
Partially-involuting congenital hemangioma
Pulmonary arteriovenous malformation
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Recent Posts
- Review of the Pediatric and Primary Lymphedema WG face-to-face meeting in London
- New scientific paper using Orphanet data provides prevalence figures on number of people living with a rare disease globally
- New Pill of Knowledge – Role of patient advocates in the ERNs from the HTAD ePAG
- VASCERN at the European Society of Cardiology Congress in Paris!
- Research News: Hereditary Hemorrhagic Telangiectasia WG publication on the safety of direct oral anticoagulants
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