Use patients’ experience!
People who suffer from cardiovascular disorders see their doctor for ten minutes only, twice a year, on average. The remaining 8765 hours, they, or their caretaker(s), have to deal with their disorder by themselves. Taking medication in time, dealing with side effects, balancing nutrition, adjusting their way of living. The patient knows better than anyone […]
CORD 2023 – rare disease day 2023
Overall, the tone of this meeting was very positive. One of the major discussions of last November’s meeting was about when the Canadian Federal Government was going to announce the Rare Disease Strategy they had been promising since 2019. A week before this conference the beginning stages of a Rare Disease Drug Strategy was announced […]
New: teachers brochures!
In collaboration with, among others, 2 psychologists from 2 different countries, we have developed a new series of brochures in several languages for the student to take to school and to give to the teacher. Meer informatie
11. Teachers brochure
A practical brochure for students to take to school. Teachers brochure in multiple languages
Blog Katie Allen Apr. 2023
I was 12 years old when I started receiving laser treatments (that’s me with the awful haircut about a month after the first one), 17 years later the marks look vastly different, though the asymmetry will always be there. Even with years of self-reflection and confidence gains, I still struggle to take a photo face-on, […]
Another Patient Advocate training in the Netherlands!
In 2022 we provided a special Patient Advocate (PA) training in the Netherlands. At our expense, we had PA’s come to the Netherlands for this self-developed training. It is now time for the ‘next step’. We have again received a subsidy (around EUR 24,000) for this next step, which consists of: Complete the PA handbook. […]
Our events in 2023
During our global members’ conference in 2022, we identified the needs of our members, among other things. One of the things that came out of this is that people would like more mutual contact moments. These are important signals that we have started working on. We are organizing our first Dutch Spring Meeting in Avifauna […]
Blog Katie Allen Mar. 2023
I had the wonderful opportunity to attend the Canadian Organisation for Rare Diseases (CORD) Rare Disease Day Conference on March 28th and 29th. I attended virtually here in British Columbia while the conference was held in Ottawa, allowing patients and patient advocates from across Canada to come together and sit down with Members of Parliament […]
Rare Diseases Day Netherlands 2023
On Tuesday, February 28, 2023, the Rare Angel Awards were presented in Amsterdam to three award winners because of their special significance for people with rare disorders. The Awards have been presented annually since 2009. Rare Angel in the category ‘patient or loved one’ is Marjolein van Kessel because of her tremendous effort for patients […]
CORD 2022 – Toronto
The Canadian Organization for Rare Diseases (CORD) hosted the Rare Disease 2022 Fall Conference in Toronto on November 21-22, 2022. Katie Allen (online) and Anna Janzen (physical) participated in this conference on behalf of our organization. Below are a number of short reports from various speakers. Summary Overall, it was an informative and goal-oriented conference. […]