The reason behind BijnierNET / AdrenalNET:
The care for patients with rare adrenal gland disorders has always been specialised, complex, expensive and labour-intensive. No-one has ever really come to grips with understanding the organisation, the process and the outcomes of such care. At the same time, it is both desirable and possible to improve the quality of the care.
With a view to improving the care provided for this exceptional group of patients, the participants in the BijnierNET have been studying the possibilities that a national electronic community could offer these patients.
Through the newly created network – which has been given the name BijnierNET (in English: AdrenalNET) – patients, healthcare practitioners and informal carers have the opportunity to meet up (in the virtual sense) and share their experience, knowledge and ideas about the care for patients with adrenal gland disorders. Even when healthcare budgets are on the decline, the network will enable those involved to maintain their knowledge and practices and perhaps even to improve them. If everyone involved in the care of patients with adrenal gland disorders shares and disseminates the available knowledge and ideas, we can ensure that the best possible care is available for all these patients.
Moreover, the aggregation of all the available knowledge could even lead to a reduction of costs.
Relating to the development of the BijnierNET (Adrenal Gland Net)
We hereby declare that we are in full agreement with the introduction of the BijnierNET (Adrenal Gland Net)
The BijnierNET will be a national, digital community operated for and by patients with adrenal gland disorders and their healthcare providers. Patients with adrenal gland disorders, united in the Dutch Adrenal Society NVACP and supported by the Friends of the NVACP/Adrenal Gland Fund, and their healthcare providers from the eight University Medical Centers now intend to establish the BijnierNET.
The intention is to make BijnierNET a national platform on which patients with a disorder of the adrenal glands and their healthcare providers can “meet up”
with a view to promoting communication and sharing experiences:
- among patients, partners, carers and parents
- among healthcare providers (doctors, nurses, psychologists) between patients and healthcare providers.
Other important objectives of BijnierNET are to offer unambiguous and reliable information about adrenal gland disorders and to answer patients’ questions. In addition, we all intend to contribute to the exchange of knowledge across the entire network of healthcare providers involved with patients with adrenal gland disorders. In order to coordinate the activities surrounding the establishment and operation of the BijnierNET, the Dutch Adrenal Society NVACP and the Friends of the NVACP/Adrenal Gland Fund, in cooperation with representatives of the participating UMCs, intend to proceed to establish the BijnierNET Foundation in anticipation of further steps and the formal launch of the BijnierNET.
For the time being, the BijnierNET Foundation’s objectives will be:
- To determine the desired developments and priorities within the BijnierNET
- To ensure that the interests of all participants are harmonized and promoted the greatest possible extent
- To ensure that grants and subsidies are acquired so that the objectives of he BijnierNET can be achieved
- To ensure that the funds so acquired are used effectively and to provide full and timely reports to the bodies providing the funds.
The board of the BijnierNET Foundation will also be accountable to the board of the Dutch Adrenal Society NVACP and the Friends of the NVACP/Adrenal Gland Fund.
Signed in Noordwijkerhout on Friday 25 January 2013.
Dutch Adrenal Society NVACP
Friends of the NVACP
- UMC St. Radboud (Nijmegen) – Prof. A.R.M.M. Hermus
- UMC Groningen – Prof. B.H.R. Wolffenbuttel
- UMC Utrecht – Dr. P.M.J. Zelissen
- UMC Leiden – Prof. A.M. Pereira Arias
- Erasmus MC (Rotterdam) – Prof. W.W. de Herder
- VUmc (UMC Free University
- Amsterdam) – Prof. M. den Heijer
- Academic Hospital Maastricht – Dr. B. Havekes
- AMC (Amsterdam) – Dr. M. Serlie
- Netherlands Adrenal Gland Network – Dr. H.R. Haak
- Dutch Endocrine Society (NVE) – Prof. E. Fliers (chairman)
- Association for Internal Medicine (NIV), Endocrinology section – Prof. A.R.M.M. Hermus
- Dutch Association for Paediatric Medicine, Juvenile endocrinology section – Dr. E.C.A.M. Houdijk (chairman)
- National Working Group of Endocrine Nurses – Nick van der Meij (chairman)
- Dutch Adrenal Society NVACP – Eva Keblusek (chairman)
- Friends of the NVACP/Adrenal Gland Fund – Johan G. Beun (chairman)
More information on Adrenal disorders in English and other foreign languages: www.adrenals.eu