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 […]
CEO Council
A non-profit patient organisation, we participate in the CEO Council of the Ministry of Health, Welfare and Sport (VWS). In this context, CEO Council means for ‘Chief Experience Officers’ Council, or someone who is an expert in healthcare. You are an expert if you regularly need healthcare (or needed it in the past), you have a disability […]
The importance of diagnostics on the European agenda
In recent years, the VSOP has thought about the importance of a timely and correct diagnosis, not only for the subsequent medical care but also for all sorts of other aspects of life. This resulted in an article in the journal Public Health Genomics titled ‘ The Value of diagnostic information in personalised Health care […]
Results survey August 2019
In August 2019 we conducted a global survey in order to determine the needs of patients and families. The main results of our global survey are described below. What type of support do you need? Meeting other patients and families to exchange knowledge and experience (63 %). Information about possible treatments (54 %). Personal medical […]
Personal support in Slovakia
Fellow contact is one of our most important activities. The main goal of contact is to bring together patients and their families. Since we are active globally, this means that our members are scattered all over the world. Unfortunately, it is not possible for everyone to come to the Netherlands for our Conference. We as […]
Prof. Dr. Pasmans runs Jungfrau Marathon for children’s skin patients!
Prof. Pasmans, one of our medical advisors, runs the Jungfrau Marathon for child skin patients! On 7 September 2019, Suzanne Pasmans will run the Jungfrau Marathon. This is an extremely difficult mountain marathon over 42 kilometers long, with climbs of 1,829 meters and 305 meters descends. As Professor of Child dermatology, Suzanne is involved for […]
Financial valuation input patient organisations
In the Netherlands, patient organisations are increasingly being asked to cooperate in all sorts of activities, investigations, projects, etc. All in the context of ‘ we talk WITH the patient and not ABOUT the patient’. There is much valuable knowledge and experience in these patient organisations. These organisations are often in discussion with many professional […]
Prof. Dr. Chantal van der Horst retires
Prof. Dr. Chantal van der Horst, one of our medical advisors (plastic surgery), retired on 28 June 2019. As part of her farewell, a special symposium was organised at the Amsterdam University Medical Centre. Many other professors and medical specialists gave presentations and showed their appreciation for Chantal, for example, Prof. Dr. Hennekam, Prof. Dr. […]
Youth representative
Our organization helps patients and families of all ages. That means our members are people of all ages. We are looking for a representative (m/f) for the age group of about 16-25 years of age. We are looking for someone who will represent the youngsters on our board. Do you know what’s happening in the […]