The EURORDIS BEST PRACTICE WEBINARS: Deep dive on integration of ERNs into national health systems will take place on October 14th at 2PM (CET).
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Hereditary haemorrhagic telangiectasia
Aneurysm Osteoarthritis Syndrome
Arterial Tortuosity Syndrome
Familial forms of bicuspid aortic valve with aortopathy
Familial thoracic aortic aneurysm and aortic dissection
Loeys Dietz Syndrome
Marfan Syndrome
Rare disease with thoracic aortic aneurysm and aortic dissection
Vascular Ehlers Danlos Syndrome
Anhidrotic ectodermal dysplasia-immunodeficiency-osteopetrosis-lymphedema syndrome
Cholestasis-lymphedema syndrome
Dahlberg-Borer-Newcomer syndrome
Deafness-lymphedema-leukemia syndrome
Genetic primary lymphedema
Hennekam syndrome
Hypotrichosis-lymphedema-telangiectasia-renal defect syndrome
Lymphedema
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
Meige disease
Microcephaly-lymphedema-chorioretinopathy syndrome
Milroy disease
Monosomy 22q13
Non-hereditary late-onset primary lymphedema
Noonan syndrome
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
Primary lymphedema with associated anomalies
Segmental progressive overgrowth syndrome with fibroadipose hyperplasia
Syndromic lymphedema
Turner syndrome
Turner syndrome due to structural X chromosome anomalies
Yellow nail syndrome
Arteriovenous malformation
Blue Rubber Bleb Nevus syndrome
Capillary malformation-arteriovenous malformation
Cerebral arteriovenous malformation
CLAPO syndrome
CLOVES syndrome
Cutis Marmorata Telangiectatica Congenita
Diffuse neonatal hemangiomatosis
Facial arteriovenous malformation
Familial cerebral cavernous malformation
Generalized lymphatic anomaly
Glomuvenous malformation
Gorham-Stout syndrome
Infantile hemangioma of rare localization
Kaposiform hemangioendothelioma
Klippel-Trénaunay-Weber syndrome
LUMBAR association
Lymphatic malformation
Macrocystic lymphatic malformation
Maffucci syndrome
Megalencephaly-capillary malformation-polymicrogyria syndrome
Microcystic lymphatic malformation
Mixed cystic lymphatic malformation
Mucocutaneous venous malformation
Non-involuting congenital hemangioma
Parkes-Weber syndrome
Partially-involuting congenital hemangioma
PHACE association
Primary intralymphatic angioendothelioma
Proteus syndrome
PTEN hamartoma tumor syndrome
Pulmonary arteriovenous malformation
Rapidly involuting congenital hemangioma
Rare capillary malformation
SACRAL association
Spindle cell hemangioma
Sturge-Weber syndrome
Tufted angioma
Venous malformation
Verrucous hemangioma
CADASIL
Moyamoya disease
Just 10 days until Rare Disease Day 2020!!!! The VASCERN Coordination team is getting ready by sharing the wonderful infographics provided on the Rare Disease Day website! Did you know that 300 million people worldwide are living with a rare disease? Rare is strong! ?? Find the infographics and lots more media material to raise awareness on the #RareDiseaseDay website here: https://www.rarediseaseday.org/downloads And let us know what you have planned on February 29th, 2020 in the comments below! ???? EURORDIS - European Rare Diseases Organisation HHT Onlus Morbus Osler Selbsthilfe e.V. - www.morbus-osler.de HHT España Amro France HHT Oslers/HHT Sverige HHT Ireland AssoMarfans Marfan Hilfe - Deutschland e.V. Asociación Síndrome de Marfan-España-SIMA . Association Belge du Syndrome de Marfan - ABSM asbl Deutsche Ehlers-Danlos Initiative e. V. bindweefsel.be -Vlaamse Vereniging voor Erfelijke BindweefselaandoeningenAFSED Association Française des Syndromes d'Ehlers-Danlos Dansk Lymfødem Forening andLINFA Svenska Ödemförbundet Nederlands Netwerk voor Lymfoedeem & Lipoedeem - NLNet Hevas VASCAPA.asbl Bundesverband Angeborene Gefäßfehlbildungen e.V. Global Cmtc-Ovm Organisation Lymphangiomatosis & Gorham's Disease Alliance ... See more