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 […]
Our Patient Advocate Erika (South Africa) 2nd place Eurordis Photo contest 2024
Once a year, around Rare Disease Day, the European Organization for Rare Diseases (Eurordis) organizes, among other things, a photo competition about patients. Our Patient Advocate Erika from South Africa won the second prize! We are very proud of our Erika! More about our Erika
Translation team Zuyd University of Applied Sciences 2024
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 […]
Blog Katie Allen February 2024
First off, Happy Rare Disease Day 2024! Last month we delved into the realities of having people stare at or bizarrely interact with you because of a skin difference. The sad reality is, that when you have a visible difference, this is going to be a part of life, and having a few strategies to […]
Blog Arianna Faro February 2024
Hi there! My name is Arianna Faro; I am 32 years of age and was diagnosed with Klippel-Trenaunay syndrome at birth. KTS manifests itself a bit differently in each patient, but for me it impacts my left leg, foot, private areas and heart. As a result of the condition, I have endured over 50 surgeries […]
Prof. Dr. Ilona Frieden (USA) – Medical advisor
Prof. Dr. Frieden is a Professor of Pediatrics and Dermatology, former Vice-Chair and former Chief of the Division of Pediatric Dermatology at the University of California, San Francisco. She received her medical degree from the University of California, San Francisco, where she also completed a pediatric internship and residency as well as a dermatology residency. […]
CMTC-OVM Members conference Netherlands 2023
Around 65 people attended our Annual General Meeting (AGM) including a limited number participated ‘online’. Participants were from Belgium, Canada, Germany, England, Japan/Singapore, the Netherlands, Slovakia, USA and South Africa. Membership meeting and other items discussed As chairman of the CMTC-OVM organization, Lex opened the AGM. The minutes of the previous members AGM are approved. […]
Blog Katie Allen January 2024
One reality of having any sort of condition on the skin is The Stares. People looking at you or doing double takes as they walk by or interact with you. Obviously, these interactions are experienced more broadly than just those with skin conditions, but to speak from my own experience, I will focus on these […]
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 […]
Blog Katie Allen December 2023
Happy Holidays from Canada. One question I often get asked by patients and families is about tattoos. I have multiple tattoos, including a couple on top of my marks. Like many people with vascular concerns, I had doctors discourage me from getting tattoos earlier in my life. However, as I got older, I faced the […]