European Patient Advocacy Groups (ePAGs) Netherlands
On 19 March 2019 the first VSOP meeting took place with fifteen Dutch patient representatives involved in the European Patient Advocacy Groups (ePAGs), part of European Reference Networks (ERNs). ERNs connect the recognised centres of excellence for rare diseases of the European Member States in order to facilitate cooperation in the field of care and […]
Roche patient organisation day
The pharmaceutical company Roche organised a patient day on 28 March, 2019. The theme was ‘ How are patient organisations relevant to young people ‘. One of the speakers shared with us what she had noticed: “First, we need to determine the needs of young people because they can differ considerably from the needs of […]
Play IT Safe
We participated in the ‘ Play IT Safe ‘ conference organised by the Ministry of Health, Welfare and Sport on 25 March, 2019. In the past, we put privacy in the spotlight on one of our social media channels. We consider privacy to be a top priority! Our organisation stays up-to-date with such developments by […]
Call for people who have had laser treatment done
Call for people who have had laser treatment done. LEAD stands for The European Laser TrEAtment Dermatology (LEAD) registry. The registry is for any medical skin condition and any type of laser. People with CMN are asked to participate and share their experience. The registry will lead to an agreement as to what should be […]
CMTC-OVM and European Reference Networks
The European Reference Networks (ERN’s) are a very important initiative for patients with rare diseases. We as an international Dutch organisation are participating in the ERN Skin and ERN Rare Multisystemic Vascular Diseases. Animation video: https://audiovisual.ec.europa.eu/en/video/I-169786 For more information visit: https://ec.europa.eu/health/ern_en
Quality of Life in Clinical Practice
In the Netherlands eHealth is a key component in improving the quality of life. eHealth also has more benefits, this was just one example. A number of academic hospitals in the Netherlands have developed a ‘Quality of Life in Clinical Practice’ website in both English and Dutch. KLIK is a method to give a clear […]
Private medical data should receive better legal protection
From 2020, any Dutch man or woman who wants to collect, inspect or manage their personal health data via a self-selected digital tool (like an app or a website) can. The Netherlands Patients Federation believes that data should receive more protection, since so far, it has not been regulated sufficiently. From 2020, medical data, whether or not included […]
The Dutch Parliament meeting Drs. Corinne Ellemeet 21 January 2019
Monday, January 21, 2019 four representatives of our patient organisations in the Netherlands were invited for a consultation with the Member of Parliament (the Dutch Parliament) Corinne Ellemeet. The following persons were invited: Prof. Rob Heethaar of Angelman Syndrome Netherlands. Carin King of the Diabetes Association. Fred Lamond of the NFK. Lex van der Heijden […]
The Dutch Parliament meeting Mr. Rens Raemakers 19 November 2018
On Monday 19 November 2018 four representatives of the patient organisations in the Netherlands were invited to consult with the Dutch parliament member Rens Raemakers. The following persons were invited: Prof. Rob Heethaar of Angelman syndrome The Netherlands. Carin Koning of the Diabetes Association. Fred Lindhout of the NFK. Lex van der Heijden of CMTC-OVM. […]
Guest lecturer University Groningen 18 September 2018
On 18 September 2018, Lex van der Heijden and Marjolein van Kessel (secretary skin patients the Netherlands and patient advocate Naevus International) held a guest lecture about ‘Entrepreneurship for medical sciences’. They talked about the non-profit organisation they established, what issues they faced and how they solved them. Van Kessel and Van der Heijden had […]