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:
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/
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
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.
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
The Government of Canada has announced the establishment of an Implementation Advisory Group (IAG) for drugs for rare diseases.
The creation of the National Strategy for Drugs for Rare Diseases will aim to improve consistent access and affordability of effective drugs for rare diseases.
Over the next three years, the IAG will provide a forum for patients and stakeholders to exchange information, provide patient-centered advice and exchange, and establish best practices for the implementation of the National Strategy.
(orphanews International 2023.11.20)