International Rare Disease Days
ROUEN CHU
International Rare Disease Day
Intervention by Dr Juliette Coursimault, clinical geneticist "Clinical research in MYT1L syndrome" and testimony from the association Les Extra-Vaillants MYT1L
International Rare Disease Day 2025 : TESTIMONIES
Raise awareness among policy makers, health professionals and the general public about the issue of rare diseases and their consequences on the lives of sick people and their families
I am taking the time to write this testimony to you because I know that it is important for my son, for the other Extra-Vaillants, for research, for moving the world forward...
Here is a list of the main difficulties that we encounter....
(testimony available in english)
"Everyday life is about navigating between light and shadow, but honestly with a lot more dark moments..."
"We hope that it is not so serious and the reality is an open door to the unknown..."
Let's not lie to ourselves, everyday life was a storm at sea where I tried to hold on to keep the family above water but it was a failure.
"ET SI NOUS PARLIONS DE CES ADULTES QUI NE RESPECTENT PAS LE DROIT...
ILS JUGENT, ILS DECIDENT, ILS CONDAMNENT ET ILS TUENT À PETIT FEU....
Leurs torts ne sont jamais reconnus, ils ne régleront jamais aucune ardoise."
" I'm tired of always having to justify myself to get in front of everyone in the queues, the looks when I walk out of a space reserved for people with disabilities, or when I get up from my electric wheelchair to get past an obstacle, due to lack of accessibility.
Tired of having to worry about whether where I'm going is wheelchair accessible....
Fed up with my sometimes unstable behavior due to this rare disease that too few people understand.
Tired of having an invisible disability...
Let's support rare diseases and those affected"
"... A general misunderstanding of this difference, of this functioning
We are lost in front of you, in front of this genetic disease
And as is often the case in society, misunderstanding leads to judgment, to interpretation, everyone gives their opinion based on their own codes....
It can't work like that!..."
...Difficulties linked to professional integration. That's the new chapter and we're right in the middle of it. Since July, Iris has had her CAP! What a bargain! And what do you do with a CAP? Well, that's where it gets complicated!
FEBRUARY 29, 2024: INTERNATIONAL RARE DISEASES DAY
YOU HAVE SHARED OUR ​ THOUSAND COLORS THANK YOU!
INTERNATIONAL DAY
RARE DISEASES 2023
Discover the MYT1L Vaillants
STRONG and PROUD
Rare Disease Day 02/28/22
HANDINAMIC Day at Rouen University Hospital
A look back at International Rare Disease Day on February 28. Monuments in several cities in France were lit up in the colors Green, pink and blue thanks to the action of the Alliance of Rare Diseases and the wonderful welcome from the municipalities. Find all the images on the Facebook page of the Alliance of Rare Diseases (click on the underlined words).
Following this colorful Monday, the HANDINAMIC day was held at the Rouen University Hospital. A big THANK YOU to the genetics teams at the Rouen University Hospital for their welcome, their warmth, their support, their commitment! The great meetings continued with the discovery of associations, athletes and committed artists!
A dynamic that gives wings to our everyday Heroes.
