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Event VASCERN PPL-WG Monthly Virtual Meeting

VASCERN PPL-WG Monthly Virtual Meeting

August 30, 2018
VASCERN MSA-WG Virtual Monthly Meeting
VASCERN VASCA-WG Monthly Virtual Meeting

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      VASCERN VASCA-WG Monthly Meeting

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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

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    Klippel-Trénaunay-Weber syndrome

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    Maffucci syndrome

    Megalencephaly-capillary malformation-polymicrogyria syndrome

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    Mixed cystic lymphatic malformation

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    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

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    8 months ago

    The Vascular Anomalies Working Group (VASCA WG)'s 2-day online meeting wrapped up today and we will share all the details from this event soon! In the meantime we would like to take a moment to congratulate one of VASCA WG's members, Dr. Willemijn Klein, from Radboud University Medical Center, who answered the European Joint Programme on Rare Diseases (EJP RD) Research Training Workshop Call and whose proposal on an Intranodal Magnetic Resonance Lymphangiography Studies Workshop, was selected for funding! 🎉👏
    This funding will allow for Dr. Klein to organise a 2-day workshop that will aim to train senior clinicians on how to perform intranodal magnetic resonance (MR) lymphangiography and interpret its findings in order to stimulate the initiation of scientific studies involving this innovative technique! Read more about it here: https://vascern.eu/vascern-members-proposal-selected-for-funding-in-first-ejp-rd-research-training-workshop-call/

    Hevas VASCAPA.asbl Bundesverband Angeborene Gefäßfehlbildungen e.V. LGD Alliance Europe - Lymphangiomatosis en Gorham's Disease Association AMLA - Agir pour les Malformations Lymphatiques Cmtc-Ovm patiëntenorganisatie Nederland
    ... See more

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