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.
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.
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
It is a Parlementary club established after a survey made by the NGO « Action Santé Mondiale » ( https://www.actionsantemondiale.fr/enquete-parlementaire-inedite-menaces-sanitaires/) This parlementary club wants to be a link between national representatives and civil society actors by proposing :
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)
A new article has been published in the Orphanet Journal of Rare Diseases which explores the day-to-day experiences of children living with rare diseases and their parents, as well as their needs and current pathways to psychosocial supports.
Five main themes : daily life with an RD; experiences with the health care system; psychosocial support; difficulties and barriers; and improvements for patient-oriented support were addressed during semi-structured interviews with young people with RD and parents of children with RD.
Overall, diagnostic delays and a lack of physician education, as well as time, socio-legal, and organisational problems all caused stress and negatively affected mental wellbeing.
Despite recent advances in awareness and care, RD still represent a great challenge for all those affected by them and their families.
(Orphanews International 2023.10.16)
The EveryLife Foundation for Rare Diseases has published a new study on the economic implications of delayed diagnosis of rare diseases.
Timely diagnosis of rare diseases is key for patients to be able to access potentially life-saving treatment and improved quality of life.
Beyond the health benefits, however, delayed diagnoses also come with greater costs for health systems.
(orphanews International 2023.09.29)