Rare disease day 2024
This year, our Patient Advocates from Canada, Austria and South Africa were active. On the final day of February, this year that was the 29th, Rare Disease Day is organised by the VSOP, the Dutch National Patient Alliance for Rare and Genetic Diseases. During the evening programme, the Rare Angel Awards were presented to three […]
PeDRA 2023 – Atlanta (USA)
Together with Naevus Global, we participated in the PeDRA (Pediatric Dermatology Research Alliance) conference in Atlanta (USA) from November 9 – 11, 2023. The Executive Director Dr. Mike Siegel invited us. PeDRA paid part of our travel costs and we were able to participate for free in the conference of almost 400 participants from various […]
EADV 2023 – Berlin
This year the global EADV (European Academy of Dermatology & Venereology) conference was organized in Berlin from October 11 – 14, 2023. It was another large conference with more than 600 speakers from more than 50 different countries with a total of 180 sessions and 15,800 participants. CMTC-OVM was represented by: Laurens Rorive, Naomi Rorive […]
CORD members meeting 2023
Our Patient Advocate Katie Allen attended the CORD membership meeting on behalf of our organization. After a quick fix on some name issues, we were off and running accepting the 2022 minutes. Then we moved on to the financial statements which are looking good. Finances are up from an increase in activity after COVID-19 but […]
Global Skin Foundation 2023 – Brussels
From June 1-4, 2023, GlobalSkin hosted ELEVATE 2023, a conference exclusively designed for dermatology patient organization leaders. The event, which took place at the Crowne Plaza in Brussels, Belgium, welcomed 200 participants. This diverse group comprised 142 patient leaders from 124 organizations spanning across 53 countries, as well as speakers, sponsors, and stakeholders. Over the […]
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 […]
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 […]
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 […]