Nov. 16, 2015
TOPIC: Featured News
Posted by Christina Jensen
The Cutis Laxa Internationale is a voluntary, non-profit association. They serve a worldwide audience with the mission of breaking the isolation of patients and families affected by cutis laxa, a rare genetic disorder of the connective tissue. Their specific activities include creating a bank of data to support research, raising funds for research, supporting patient networking, and providing information about cutis laxa to medical professionals, the media and other interested parties. Established in 2001, this organization is based in France.
1.) What does it mean to you personally to be a patient organization serving the rare community?
My family stood alone for a very long eight years after our daughter had been diagnosed with Cutis Laxa. There was no treatment, no organization, or doctors that knew of another case like our daughters. When we set up Cutis Laxa Internationale with the other families, our main goal was to break patients’ and families’ isolation and loneliness.
Today when a newborn is diagnosed with CL, Cutis Laxa Internationale is there to answer the numerous questions from parents. Patients and families are not alone any more. There are people they can talk to who know what they are talking about. I don’t want anyone with a rare disorder to be left alone as we were when our daughter was diagnosed.
2.) What do you find your patient community values most from your organization?
I believe that they value being able to ask questions and get answers. It is so valuable to them to be able to discuss daily issues and learning of the other parents’ ideas to solve them (when not specifically medical issues). They also value having a place where everyone understands them without having to explain for hours what the disorder has brought in your life
3.) What are some of the challenges your organization has faced?
Like many rare disease organizations, our challenges lie in finding enough volunteers and coming up with the financial means to support the organization.
4.) Whats been your most successful awareness campaign and/or fundraising event?
We have found success in organizing international meetings for patients. We are proud to be able to fund part of the travel and accomodation costs for all patients and families attending whether they come from France (our country) or abroad (USA, Japan, Lebanon, several european countries, Argentina, etc.)
138 impasse de Champs Gervais
74890 Bons en Chablais, France
NORD is happy to be putting the spotlight on Cutis Laxa Internationale this week. You can look forward to social media posts on our Facebook and Twitter accounts about Cutis Laxa Internationale throughout the week! Member Organizations to NORD interested in Member Spotlight should contact their regional membership managers at NORD to learn more!