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VASCERN PPL-WG Monthly Virtual Meeting

November 27, 2018
VASCERN Patient Group (ePAG) monthly virtual meeting
Rare Disease Day 2019

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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

    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

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    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

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    3 days ago

    We are very pleased to announce the publication of an article entitled “𝙚𝙃𝙚𝙖𝙡𝙩𝙝 𝙛𝙤𝙧 𝙥𝙖𝙩𝙞𝙚𝙣𝙩𝙨 𝙬𝙞𝙩𝙝 𝙧𝙖𝙧𝙚 𝙙𝙞𝙨𝙚𝙖𝙨𝙚𝙨: 𝙩𝙝𝙚 𝙚𝙃𝙚𝙖𝙡𝙩𝙝 𝙒𝙤𝙧𝙠𝙞𝙣𝙜 𝙂𝙧𝙤𝙪𝙥 𝙤𝙛 𝙩𝙝𝙚 𝙀𝙪𝙧𝙤𝙥𝙚𝙖𝙣 𝙍𝙚𝙛𝙚𝙧𝙚𝙣𝙘𝙚 𝙉𝙚𝙩𝙬𝙤𝙧𝙠 𝙤𝙣 𝙍𝙖𝙧𝙚 𝙈𝙪𝙡𝙩𝙞𝙨𝙮𝙨𝙩𝙚𝙢𝙞𝙘 𝙑𝙖𝙨𝙘𝙪𝙡𝙖𝙧 𝘿𝙞𝙨𝙚𝙖𝙨𝙚𝙨 (𝙑𝘼𝙎𝘾𝙀𝙍𝙉) in the Orphanet Journal of Rare Diseases (OJRD), which outlines the work of our former eHealth Working Group.

    "Overall, the work carried out by the eHealth WG of VASCERN can be seen as a pilot experience that may serve as a basis to for collaborative development of patient-centred eHealth tools that answer the needs of patients with various rare diseases, not limited to rare multisystemic vascular diseases. By expanding the multidisciplinary approach here described, clinical and research networks can take advantage of eHealth services and use them as strategic assets in achieving the ultimate goal of ensuring equity of access to prevention programs, timely and accurate diagnosis and specialized care for patients with rare diseases throughout Europe."

    Read more and access the full article here: https://vascern.eu/new-ojrd-publication-highlights-vascerns-ehealth-services-and-main-actions/
    ... See more

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  • Recent Posts

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