Workshop on Scaling Innovative Care Delivery for Rare Diseases and Complex Conditions was held in October by the INNOVCare Project. This project aims at bridging the gaps between health, social and local services to improve care of people living with rare and complex conditions. Presentations can be found here
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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
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
Capillary malformation-arteriovenous malformation
Cerebral arteriovenous malformation
Cutis Marmorata Telangiectatica Congenita
Diffuse neonatal hemangiomatosis
Facial arteriovenous malformation
Familial cerebral cavernous malformation
Infantile hemangioma of rare localization
Kaposiform hemangioendothelioma
Klippel-Trénaunay-Weber syndrome
Macrocystic lymphatic malformation
Megalencephaly-capillary malformation-polymicrogyria syndrome
Microcystic lymphatic malformation
Mixed cystic lymphatic malformation
Mucocutaneous venous malformation
Non-involuting congenital hemangioma
Partially-involuting congenital hemangioma
Primary intralymphatic angioendothelioma
Pulmonary arteriovenous malformation
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