About
Cutis Laxa Internationale is dedicated to all those who are concerned by this rare genetic disorder Cutis Laxa: sufferers, sufferers’ families, but also health professionals, and all people interested in rare disorders issues.
Impact Fund Project
We welcomed patients, families, doctors, and researchers for a 4 days event including clinics (2 days), a symposium (1 day), and a scientific session (1 day). Besides the fact that meeting each other is of utmost importance for patients, they learned a lot about their disease. The scientific day led to making the first step towards an International Research Consortium including a Patient Advisory Board. All participants, whether they were patients, families, or doctors and researchers, felt it was a unique opportunity to learn from each other about this very rare disorder with a census of 522 cases worldwide Cutis Laxa.
Thanks to the Member Impact Fund we were able to fund 70% of their travel expenses for patients to be able to attend. 11 countries were represented: Australia, USA, Canada, Mexico, Belgium, Norway, UK, Italy, Germany, France, and Lebanon.
The Biggest Success of the Project in Our Patient Community
Quote from patients and parents on the feedback questionnaire: "The hospitality was amazing, very great to meet other Cutis Laxafamilies. The clinic staff was perfect and very patient with our questions" "Simply perfect !" "Just wonderful, I loved the whole team, thanks to all of you" "Meeting other parents and/or patients was enriching, thank you to CLI, Thank you for the tremendous work, Thank you for the doctors' team, they were very kind and educational, added to their medical expertise. We really felt we were in good hands "
To learn more about this organization, please visit:
Website: www.cutislaxa.org
Facebook: https://www.facebook.com/CutisLaxaAssociation
