ESPE Abstracts (2016) 86 WG7.2

The Activities of AdrenalNET and the Paedeatric Emergency Card for Europe

Johan Beun

The Netherlands

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: AdrenalNET helps adrenal gland patients, carers and healthcare practitioners find reliable, accessible and understandable information (both scientific and general), and offers a secure platform for the exchange of information so that together they can improve the care provided - from the diagnosis itself to the scheduling of care - all with a view to reinforcing the patient’s management of his or her own life.

Board: The Board consists of representatives of the Dutch Adrenal Society NVACP, the Dutch Adrenal Fund, the University Medical Centers, the teaching hospitals, the LWEV and the Dutch College of General Practitioners (NHG). This broad-based involvement ensures that all aspects of caring for patients with adrenal gland disorders are represented. The Executive Board consists of two doctors (Ad Hermus of Radboud UMC and Anton Franken of Isala Hospital), two patients (one of whom is Alida Noordzij), and the coordinator, Johan Beun.

Task: The activities of AdrenalNET focus primarily on three areas that are particularly important for people with an adrenal gland disorder, namely:

• Improving the quality of specialist-led chronic care

• Improving diagnosis

• Improving care in emergency situations.

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