Blog Katie Allen June 2023
Summer fun on vacation is just one of those childhood memories that glows the brightest. However, when you have a rare disease, there are a few handy tips for making it all fun in the sun. The first lesson I learned was to have extra medications, whether it’s cancelled flights or wildfire season in Canada, […]
Eurordis 2023 – Stockholm
Finally, Eurordis was able to organize a ‘real’ in person members conference. The last time this took place was in 2019 before the Corona pandemic. From May 25 to 27, 2023 250 people from all over Europe gathered in Stockholm, Sweden. 25th of May On the 25th of May there were 2 parallel sessions held: […]
ISSVA 2023 – Boston
The ISSVA (International Society for the Study of Vascular Anomalies) is a multidisciplinary international organization of doctors, scientists and healthcare providers united by an interest in vascular anomalies. The ISSVA organised a worldwide conference in Boston (USA) from 19 to 21 April. There were 279 participants physically present and 263 participants joined ‘online’. The title of the conference […]
VAC 2023 – Brussels
Organised by the DeDuve Institute in Brussels, Belgium, the Vascular Anomalies Conference took place from the 31st of January to the 3rd of February. One of the directors of the Institute is Prof. Dr. Miikka, Vikkula, who is also one of our advisors. There were around 220 people from around 15 countries present, including, among […]
Participate in groundbreaking research
As an organization, CMTC-OVM has been a member of the organization Global Skin for many years now. The GRIDD study (Global Research on the Impact of Dermatological Diseases) collects international data on the impact of skin (dermatological) disorders on the lives of patients. To collect this data, a new questionnaire “Patient-Reported Impact of Dermatological Diseases” […]
Blog Katie Allen May 2023
Spring has finally hit the west coast of Canada, though it’s probably more accurate to say we skipped spring entirely and went straight to summer. Our little town had its second annual tulip festival, and while it may be much smaller than the tulip fields of Amsterdam, it was still so pretty that you just […]
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