This is the title of the book recently published, in French and in English, by Dr Pascal SOMMER, Emeritus Research Director oat the French National Center for Scientific Research (CNRS).
He has been following Cutis Laxa and our association for more than 20 years.
The book is available online, printed or downloadable:
Our census of Cutis Laxa patients allows today to establish
its breakdown by known types and also by countries
You can find here the table updated on 2024, February 12th
Carried out between January and April 2023, together with EMMA Society, this international survey evaluates the prevalence (number of cases among a defined population), impacts, behaviours and needs of different skins and skin disorders depending on geographical areas, countries or complexion.
It included 50,552 participants (adults ≥16 yo) in 20 countries (China, USA, Brazil, India, Australia, France, Italy, Canada, Denmark, Germany, Israel, Kenya, Mexico, Poland, Portugal, Senegal, South Africa, South Korea, Spain and United Arab Emirates) distributed across the 5 continents.
It is therefore the biggest private database in dermo-cosmetics.
Take a look at all the results on this page : https://www.changer-de-regard.com/#all
Marie-Claude Boiteux took part in writing a new scientific publication : « Testimonies, feelings, complaints and emotional experiences of patients suffering from dermatosis on social medias : French Infodemiologic* Study of patients’ uncensored words ».
Steming from a work led by Pierre Fabre Dermo-Cosmetic & Personal Care together with the society Kap Code specialised in the analysis of real-life data in health who listened for 3 years to patients’ uncensored words as publicly expressed on social media.
The internet offers a forum to those for whom the skin disorder bridles their social relationships. Through social media, they share their real-life experience and reveal what they do not say – because they do not dare to or because of lack of time – in medical consultations: Self-image, physical and psychological impacts, therapeutic roving, etc.
Collected, analysed and related verbatims, this work shows the emergency and need to « change our gaze on visible disorders of the skin”. https://www.changer-de-regard.com/#ecoute-reseaux
*Infodemiology was defined by Gunther Eysenbach in the early 2000s as information epidemiology.It is an area of science research focused on scanning the internet for user-contributed health-related content, with the ultimate goal of improving public health. It is also defined as the science of mitigating public health problems resulting from an infodemic.
This program has been set up by the “Patient Relationship” Department of Pierre Fabre Laboratories.
Living with a visible disorder of the skin on your face and/or hands, means been continuously under the gaze of others, embarrassment and reactions that are sometimes disconcerting and even hurtful from people just passing by or met daily.
The gaze, even covert, can have unsuspected impacts on the life of people living with a visible disorder of the skin.
Let’s become aware of the power of a gaze that, if it can damage the daily life, can also illuminate it!
Listen to the podcast with patients’ interviews and try the « e-motion experience », a unique moment « in the skin of a patient ».
Enjoy visiting its page, in French and/or English : https://www.changer-de-regard.com/
After two years of collaborative work with patients, medical professionals, medico-social professionals and the National Office of Solidarity for Autonomy (CNSA), here is a concrete result of the work led by the FFP.
Because the skin is the biggest organ of our body and to understand the impacts of skin disorders, the Skin Disability Guides provide the urgent keys to evaluate the disabilities patients are facing.
The Patient Guide help them correctly fill the needed forms to assert their rights if it is possible in their country.
These documents are downloadable hereunder (in French).
An article has just been published in JEADV :
Patients’ testimonies, feelings, complaints and emotional experiences with dermatoses on open social media:
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.
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.
17th November 2023 :
In the beautiful setting of the « House of Latin America » in Paris, the French Network FIMARAD had organised its 8th National Day.
During their presentation, Patient Representatives shared their concern about the survival of patient organisations. The latter, especially small organisations such as CLI, always need to fight to achieve their aims because they lack both volunteers and funding.
The non-existence of funding from the government and from health authorities when they ask for greater participation in health activities is a crucial topic.