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.<\/p>\n
1.) What does it mean to you personally to be a patient organization serving the rare community? 2.) What do you find your patient community values most from your organization?<\/strong><\/p>\n 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’\u00a0ideas to solve them (when not specifically medical issues). They also value having a place where everyone understands them\u00a0without having to explain for hours what the disorder has brought in your life<\/p>\n 3.) What are some of the challenges your organization has faced?<\/strong><\/p>\n Like many rare disease organizations, our challenges lie in finding enough volunteers and coming up with the financial means to support the organization.<\/p>\n 4.) Whats been your most successful awareness campaign and\/or fundraising event?<\/strong><\/p>\n We have found success in organizing international meetings for\u00a0patients. We are proud to be able to fund part of the travel and accomodation costs for all patients and families attending\u00a0whether they come\u00a0from France (our country) or abroad (USA, Japan, Lebanon, several european countries, Argentina, etc.)<\/p>\n Address<\/strong><\/p>\n 138 impasse de Champs Gervais Phone<\/strong><\/p>\n 33456307443<\/p>\n Fax<\/strong><\/p>\n 33456307443<\/p>\n Email Address<\/strong><\/p>\n
\n<\/strong>My family stood alone for a very\u00a0long 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\u00a0with the other families, our main goal\u00a0was to break patients’ and families’ isolation and loneliness.
\nToday when a newborn is diagnosed with CL, Cutis Laxa Internationale\u00a0is 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.\u00a0I don’t want anyone with a rare disorder to be left alone as we were when our daughter was diagnosed.<\/strong><\/p>\n
\n74890 Bons en Chablais, France<\/p>\n