Dr. Federica De Majo – Focal point AVM Brain
My name is Federica De Majo. I am Italian, born in 1993, and I live in Utrecht, a lovely Dutch city, with my boyfriend Daniel, who is originally from Mexico. I work as a senior scientist and consultant for a biotech company. In March 2025, we lost our first son, Tommaso, to a very severe […]
CMTC-OVM Rare Disease Day video
Op 28 February 2026, Rare Disease Day will once again be organised worldwide. We have created a new Rare Disease Day video.
Blog Katie Allen January 2026
An aspect of my CMTC that I don’t discuss very often is the hypermobility in my joints, especially on my impacted side. Both sides of my body have fairly mobile joints; however, my affected side is significantly more problematic. A notable visual difference in the mobility of my sides is that, while I can touch […]
Blog Arianna Faro January 2026
About a week back, I was walking the mall with my walker in tow when a young man wearing a volunteer apron approached me. He was standing near a boothe that said Children’s Hospital Boston (CHB), along with another man volunteer. Upon approaching me, he said something along the lines of “hello, can I tell […]
Mandy (United Kingdom)
I was born in 1975 & straight away my extreme overgrowth condition was visible with my lower limbs being at least 4-5 times larger & a club foot. I wasn’t expected to live more than 2 weeks, during which time my mum wasn’t even allowed to see me! My early years did involve several visits […]
Promotion Dr. Patrick Kemperman
On Friday, December 12 2025, dermatologist Patrick Kemperman, one of our advisors, successfully defended his PhD at the University of Amsterdam. His research focused on so-called delusional infestation (also known as parasitic delusion): a rare psychiatric disorder in which individuals are convinced that parasites or insects are present on or in their body, despite the […]
Dr. Dario Teplisky (Argentina) – Medical advisor
Darío J. Teplisky, MD is a pediatric interventional radiologist based in Buenos Aires, Argentina. He coordinates the Interdisciplinary Vascular Anomalies Group at Hospital de Pediatría Juan P. Garrahan and the Center for Vascular Anomalies at Sanatorio Mater Dei. He is co-director of PEDimage, a pediatric imaging center, and founder and current president of the Ibero-American […]
CORD members meeting 2025
Our Patient Advocate Katie Allen attended the CORD membership meeting on behalf of our organization. The day started in Ottawa with the Rare Multiverse showcase and the opportunity for in-person members to interact and meet with members of parliament. This was not available to Zoom meeting members, but apparently was very successful. It provided different […]
Video impression members’ conference 2025
We have made another video during our 2025 members’ conference to give an impression. There were so many activities that we were not able to include them all in this video. Go to report with video and many pictures of our members’ conference
Blog Katie Allen December 2025
It’s that time of year, Happy Holidays to everyone! It is December on the west coast of Canada, so we are in full rainstorm mode with a very rare scattering of snow, but it is definitely starting to feel a bit like the holiday season as the temperature drops. After a couple of months of […]