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BijnierNET/AdrenalNET: AdrenalNET is the result of collaboration in the domain of adrenal gland disorders between healthcare providers, patients, nurses and informal carers. An extremely good modus of cooperation has developed between the endocrinologists at all the Dutch university medical centers and ten of the top teaching hospitals, the patient association (Adrenal Society NVACP) and the National Working Group of Endocrine Nurses (LWEV).The mission: ...

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hrp0089fc14.1 | Multisystem Endocrine Disorders | ESPE2018

Awareness and Participation in Rare Disease Registries Within the European Reference Network on Rare Endocrine Conditions (Endo-ERN)

Ali Salma R , Bryce Jillian , Cools Martine , Korbonits Marta , Beun Johan G , Taruscio Domenica , Beuschlein Felix , Danne Thomas , Dattani Mehul , Dekkers Olaf , Linglart Agnes , Netchine Irene , Nordenstrom Anna , Patocs Attila , Persani Luca , Smyth Arlene , Sumnik Zdenek , Visser W Edward , Hiort Olaf , Pereira Alberto M , Ahmed S Faisal

Background: Registries are of key importance for a centre of expertise. Endo-ERN consists of 71 reference centres (RCs) that cover several groups of rare endocrine conditions within 8 themes (www.endo-ern.eu). It is unclear if awareness, participation and availability of registries is uniform for all conditions within Endo-ERN.Objective: To determine the extent of engagement in registries of Endo-ERN members.<p cl...

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ESPE Abstracts

The Activities of AdrenalNET and the Paedeatric Emergency Card for Europe

Awareness and Participation in Rare Disease Registries Within the European Reference Network on Rare Endocrine Conditions (Endo-ERN)

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