Interview with Pr.Bert Callewaert
All you need to know about Cutis Laxa, all your questions are in Pr Callewaert’s interview
(in French)
IN THE MEDIA
06th March 2024 Le Monde (French Newspaper)
Rare Disorders – the Challenge of Diagnosis
15th March 2024 Festival of Communication in Health :
Interview with Catherine Baissac, Patient relationship – Pierre Fabre Dermato-Cosmetics
28th April 2024 Charente Libre (French Newspaper) :
The « Brin d’Aillet » run in Sireuil (France) to the benefit of Cutis Laxa Internationale
The growing role of patient groups in healthcare research.
Patient groups contribute to research in three different ways :
- In clinical trials and real world evidence : The groups offer a unique perspective and act as research subjects, advisors, reviewers, and even researchers. They can be involved at any stage of clinical trials from the pre-approval and design to making sure the research results reach their patient community.
- In Health Technology Assessment (HTA) : This is a systematic process that evaluates technologies like medicines and medical devices. The assessment determines if they are clinically effective, cost effective or have any social/ethical impact. Patients and patient groups are increasingly involved in the process, providing insight into their condition and the impact of new technologies.
- In Regulatory decisions : Patient groups are involved in regulatory processes offering real-world evidence for better medical regulation. In Europe, their views are crucial for transparent communication on medicines and valuable input into the review of information on medicines like package leaflets and safety communications.
Read the article published by Patientview in February 2024 (in English)
ELASTICITY OF LIFE
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:
Survey ALL
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
KAPCODE Study
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.
VDS (Visible Disorders of the Skin) Program
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’s interview on Grey Genetics Patient Stories Podcast
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
Virginie BROS-FACER, new CEO of Eurordis
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.
Reaffirming at all levels the commitment to and participation of users
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 :
- Promoting the commitment to and the participation of users with health professionals ;
- Effectiveness of individual rights recognised in the laws of 2002 and those adopted afterwards;
- Representation of users by agreed organisations ;
- Reinforcement of users‘ knowledge.
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.