The association aiming at improving the condition of people suffering from Cutis Laxa has updated his website and will now provide new contents about the disease.
From isolation to collective work
After the birth of their daughter Cecile, Jean-Louis and Marie-Claude had to learn that she suffered from a very rare genetic disorder: Cutis Laxa. Given the non-existence of any association tackling this disease at that time, the parents had to face the unknown alone. Fortunately, thanks to their effort to reach to other people affected by the disease in the world, but also the increased visibility obtained by TV programmes such as “Telethon” or “Ça se discute”, a network began to develop. Eventually, the association was officially created on 11th November 2001 and now gathers active members from, amongst others, France, Australia, USA, Belgium and Iran.
New projects to come
The main work of the association is to enable people suffering from Cutis Laxa to break their isolation. Thanks to its visibility on the internet, either via its website or via the social networks, they can get in contact with other people concerned by Cutis Laxa. Also, these channels are a constant opportunity to disseminate a lot of information for patients or general public.
THE MEDICAL WORLD
The ERN activities will become more intense and 2018 will be a tough year regarding meetings, physical or on-line. There will also be a fundamental hard work to support projects like classification of each form of each disease concerned by its sub-thematic group or writing guidelines/consensus for diagnosis and care.
Besides, sharing information will remain a priority, in a cross-linked way, with the medical and research teams supported and helped by the association. Any up-to-date information on Cutis Laxa will be centralized and spread in the relevant medias. That essential partnership with doctors and researchers will take all necessary steps to gather patients’ consent for their data to be, eventually, and with their agreement, forwarded to research projects.
International: Cutis Laxa is involved in the EPAGs and is member of Rare Disease International, Eurordis, Geneticalliance and several other support groups working internationally or based out of France. Thus it will spread its links and friendship networks throughout the world.
Local: The CLI official address moved to Haute-Savoie 10 years ago and the local network is widening further. Consequently, opportunities are growing for sharing, working together and regrouping efforts.
Through these exchanges, relationships and workgroups with other support groups, it became possible to share experiences, knowledge and skills in the health and rare disorders fields. These are also a friendly way to get Cutis Laxa known and recognised, and the opportunity to have a stall and sell various objects to CLI’s benefit at local group events.