The European Rare Disease Network for HHT Frameworks for management of hereditary haemorrhagic telangiectasia in general and speciality care

Autor: Fabio Pagella, Annette Dam Fialla, E. Boccardi, Sara Ugolini, Saverio Alicante, Claire L. Shovlin, David C. Lefroy, Bryony A Jones, Freya Droege, O Dupuis, Pernille Mathiesen Toerring, Ujwal Kariholu, Maneesh C. Patel, Ali Alsafi, Catherine Rennie, Sophie Dupuis-Girod, Anette Drøhse Kjeldsen, Ulrich Sure, Carlo Sabbà, G Manfredi, Gennaro M. Lenato, T H Nielsen, N. Coote, Hans Jurgen Mager, Marco C. Post, E. Buscarini, O F Eker, Patrizia Suppressa

Publikováno v: Shovlin, C L, Buscarini, E, Sabbà, C, Mager, H J, Kjeldsen, A D, Pagella, F, Sure, U, Ugolini, S, Torring, P M, Suppressa, P, Rennie, C, Post, M C, Patel, M C, Nielsen, T H, Manfredi, G, Lenato, G M, Lefroy, D, Kariholu, U, Jones, B, Fialla, A D, Eker, O F, Dupuis, O, Droege, F, Coote, N, Boccardi, E, Alsafi, A, Alicante, S & Dupuis-Girod, S 2022, ' The European Rare Disease Network for HHT Frameworks for management of hereditary haemorrhagic telangiectasia in general and speciality care ', European Journal of Medical Genetics, vol. 65, no. 1, 104370 . https://doi.org/10.1016/j.ejmg.2021.104370

Hereditary haemorrhagic telangiectasia (HHT) is a complex, multisystemic vascular dysplasia affecting approximately 85,000 European Citizens. In 2016, eight founding centres operating within 6 countries, set up a working group dedicated to HHT within

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