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  • EU languages

    Do’s & Don’ts Factsheets for rare vascular disease patients
  • Upcoming

    • Mon
      18
      Feb
      2019

      ERN WG on Knowledge Generation/Working subgroup on Training and Education Workshop

    • Mon
      18
      Feb
      2019

      VASCERN PPL-WG Monthly Virtual Meeting

      17.30-18.30
    • Wed
      20
      Feb
      2019

      VASCERN VASCA WG Monthly meeting

      15.30-16.30
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  • Rare diseases covered by VASCERN

  • Hereditary Haemorrhagic Telangiectasia

    Hereditary haemorrhagic telangiectasia

    Hereditable Thoracic Aortic Diseases

    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

    Medium Sized Arteries

    Vascular Ehlers Danlos Syndrome

    Pediatric and Primary Lymphedema

    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

    Megalencephaly-capillary malformation-polymicrogyria 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

    Vascular Anomalies

    Arteriovenous malformation

    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

    Capillary-venous malformation

    Cerebral arteriovenous malformation

    CLAPO syndrome

    CLOVES syndrome

    Cutis Marmorata Telangiectatica Congenita

    Diffuse capillary malformation with hypertrophy

    Diffuse neonatal hemangiomatosis

    Epithelioid hemangioma

    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

    Lymphatico-venous malformation

    Macrocephaly-capillary malformation

    Macrocystic lymphatic malformation

    Maffucci syndrome

    Microcystic lymphatic malformation

    Mixed cystic lymphatic malformation

    Mucocutaneous venous malformation

    Multifocal sporadic venous malformation

    Non-involuting congenital hemangioma

    Papillary intralymphatic angioendothelioma

    Parkes-Weber syndrome

    Partially-involuting congenital hemangioma

    PHACE association

    Proteus syndrome

    PTEN hamartoma tumor syndrome

    Pulmonary arteriovenous malformation

    Pyogenic granuloma

    Rapidly involuting congenital hemangioma

    Rare capillary malformation

    SACRAL association

    Spindle cell hemangioma

    Sturge-Weber syndrome

    Tufted angioma

    Venous malformation

    Verrucous hemangioma

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    Rare Disease Day 2019 testimonial from Croatia

    New Rare Disease Day video featuring Karlo from Croatia who tells his story of living with neurofibromatosis type 1 and how sport has helped him recover from his surgeries and the beneficial support he has received from the patient organisation he belongs to! #RareDiseaseDay2019 is less than 2 weeks away! We can't wait! 😊 #ShowYourRare ... See more

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