Blog Katie Allen April 2024
[This time I wanted to address an interesting aspect of living with a visual difference that I feel doesn’t get discussed often enough. The reality for many people who have CMTC or other vascular birthmarks on visible locations, especially the face, is the assumption many people make that a physical difference means a mental impact. […]
Meet our Katie from Canada!
Meet our Katie from Canada! Read her blog too
Blog Katie Allen March 2024
Happy Belated Rare Disease Day! The last couple of months have been exciting, with launches and decision-making occurring in Canada, and I am so excited to share the changes coming. Canada hosted a Rare Disease Day Conference on this so very rare day February 29th. We also launched the first Canadian Rare Disease Network. This […]
Program and registration Family Weekend 2024 available!
In 2024 we will organize a third event to meet each other! In addition to the well-known Family Day in the Efteling (this year on Saturday 6 July) and our members conference on 26 and 27 October, we are now also organizing a Family Weekend on Saturday 25 and Sunday 26 May 2024! Program and […]
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. […]