What about talking … about skin disorders ? :
The French Federation for Skin (FFP) has just published a booklet for children (In French). Fruit of work with children with or without a skin disorder, with an adapted design made by the organisation « The Little Citizens », it perfectly answers the children’s questions about skin disorders and aims to get rid of bullying for those who suffer from those disorders.
Dave Jacob, founder fo ThinkGenetic, featured on the Grey Genetics Patient Stories Podcast on 30th January 2024.
He recounts his diagnostic journey, which ultimately led to a diagnosis of Cutis Laxa.
He shares how his personal experience as a rare disease patient inspired the inception of both ThinkGenetic Inc. and ThinkGenetic Foundation.
Give a listen
WHSC gathers together all stakeholders concerned with the health of the skin : patient organisations, health professionals, medical and research societies and industrial partners, to strengthen our collective power in order to raise awareness on the global impact of dermatological disorders and conditions and put them at the top of health policies’ agendas. We are members of the coalition.
CONECT Project (Cardio-Ocular NEtwork Connective Tissue)
gathers together several organisations dedicated to connective tissue rare disorders with cardiovascular involvement : Arterial Tortuosity Syndrome, Marfan Syndrome, Ehlers-Danlos Syndrome, Cutis Laxa, Loeys-Dietz Syndrome, etc… Initiated by the American Patient Organisation for Arterial Tortuosity (ATOF-ATS), it aims to build a collaboration to evaluate the common issues in a population with similar patients, to inform on possible treatments that are not widely known, to ensure that patients have a minimum of scientific and clinical knowledge on their disorder to be able to give their informed consent to take part in research programmes and to improve their quality of life. Online webinars have already been set up, for patients as well as health professionnals.
In September 2023, Yann Le Cam announced his decision to retire from the position of CEO of Eurordis. Virginie Bros-Facer will then take over in March 2024. She had previously worked with Eurordis as Scientific Director before joining various organisations where she worked in the field of research and patient engagement for rare disorders.
In her own words, she is delighted to be back in Eurordis.
Today, a great number of meeting, working groups, workshops,etc are on line.
Here is a list of what happened during the last 6 month of 2023 :
9th June : Working Group “Pregnancy” 26th June : Eurordis Patient Partnership
28th June : Pfizer Club “Real Life Data” 28th June : Pierre Fabre “Associations’ funding”
10th October : G5 Health 20th October : Webinar “Lobbying”
13th November : ePAG Steering Committee
28th November : Webinar “Connective Tissue Disorders (PXE)”
11th September and 14th December : World Skin Health Coalition
16th November 2023 :
Following a first online meeting on 22nd June about Patient engagement, SpotInfoPatients, organised by BMS Laboratory, gathered together several patient representatives for a workshop on the role of decision-makers in the health sector.
9th December 2023 :
For the first time, the Fair Committee organised the Téléthon in Bons en Chablais. Cutis Laxa Internationale was present and offered children a range of activities,e.g. drawing hands to make a fresco i.e. our logo and face painting. € 3,050 were collected for the Téléthon
18th and 19th December 2023 :
Marie-Claude Boiteux presented to children aged 11-12 at the Bons en Chablais secondary school: 200 children attended this awareness raisinf talk about skin disorders. The aim was to reduce the stigma and bullying that children with a skin disorder may face at school.
Each child was given the booklet edited by the French Federation for Skin:
« What about talking…. about skin disorders »
In an article published on 12th December 2023 on the occasion of the National Health Strategy, the High Anthority for Health identified four topics which require much effort and progress :
For us, CLI, these four topics, to which must be added the lack of volunteers and financial means, are the main topics to work on during the coming years if we want to protect the survival of all voluntary organisations.
6th – 8th December 2023
After such a day full of contacts and information during the 5th Conference of the FFP,
it was time to run the booths for FFP and CLI during the three days of the JDP. 
The “ Village of Patient Organisations” where all our organisations are gathered together,
inaugurated by Pr Gaëlle Quereux,
new chair of the French Society of Dermatology,
provides great visibility and the opportunity for interesting contacts.
5th December 2023 :
the French Federation for Skin organised its 5th National Conference,
in preparation for the Dermatology Days of Paris (JDP).
It was a great success with the opening by Senator Philippe Mouiller, Chair of the Commission for Social Affairs,
and the presence of representatives from various authorities in the field of Health.
Four round tables allowed an exchange on the future of dermatology,
and patients’ role in research.
(listen to the replays here, in French)
It was also the occasion to present the achievments of the FFP in 2023 :
Disability Guides and Booklet for children you can download below (in French)
Guide handicap peau_web Guide patients handicap peau_12-23_web