Project Patient Advocates
We received a subsidy of approx. 35,000 Euro from ZonMW, a department of the Ministry of Health, Welfare, and Sport in order to run this project. The biggest problem that effects patients and their parents is obtaining a correct diagnosis. This is in fact the case for all rare diseases. Our idea is to use […]
Members Conference 2020
We are working hard on the organization of our global conference on 24 October 2020. The venue has been set and a few speakers such as Prof. Dr. Miikka Vikkula have also been confirmed. For the siblings of a patient, we will organize a separate session, which will include the guidance of a psychologist, for […]
Panel participation
The 3rd edition of the European Reference Network-(ERN) Skin live training was held in Ghent, Belgium on the 16th of December 2019. The course, accredited by the UEMS (European CME credits) focused on: mendelian connective tissue disorders, cutaneous diseases related to DNA repair disorders, hidradenitis suppurativa, cutaneous mosaic disorders, naevi and nevoid skin disorders, complex […]
Cooperation Zuyd University of Applied Sciences
Our organization operates worldwide, which means that we offer our information in multiple languages. For example, our website is available in English and Dutch and our information leaflets in at least German, English, French, Dutch and Spanish. The translation work takes quite some time and we are always looking for volunteers to help. Zuyd Vertalingen […]
Family Day 2020
Our members have again chosen the Efteling for our worldwide Family Day, which will take place on Saturday 29th August 2020! We will start at 10:00 with a warm welcome and once more we will offer lunch. The participants can have fun until 10 o’clock in the evening! This will be a challenge for the […]
New Year meeting 2020
“MIND”, “Leder(in)”, the Patient Federation (“Patientenfederatie”) and “INVOLV” organised a New Year meeting on 15th January on collective advocacy, decision-making and participation. During this meeting, we looked back on 5 years of decentralization, together with experts and stakeholders. We evaluated and we looked to the future. What is the situation now with collective advocacy? Can […]
Subsidy for 2020 granted!
The Dutch Ministry of Health, Welfare and Sport has awarded us the institutional grant for the year 2020! The amount of subsidy is € 55,000 this year, consisting of € 45,000 for our core tasks of contact with patients and families, information provision and advocacy. The subsidy of € 10,000 for our outsourced ‘back office’ […]
Invited by Dutch Ministry of Health, Welfare and Sport
The Ministry of Health, Welfare and Sport intends to issue a “Contour note” before the summer of 2020. This will address the organisation’s challenges regarding care and support and possible solutions. Various sources are consulted for both the problem analysis and the formulation of solution directions. Discussions are being held with many stakeholders in healthcare, […]
Sponsering project (general) practioners brochure
The general practitioner is the doctor who, normally, sees patients most often, has a total overview of all diseases and usually knows the immediate family best. The general practitioner, the 1st line, is also the first medical contact point for a patient. In collaboration with the Association of Cooperating Parents and Patient Organisations (VSOP), the […]
World Light Day 2019 Netherlands
On 8 December we helped organise and participated in the Worldwide Candle Lighting Day in the Netherlands. Every 2nd Sunday in December, Worldwide Candle Lighting Day, the day of the deceased child, is held. On this day, people all over the world light candles at 7 p.m. in memory of deceased children. It doesn’t matter how […]