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)
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)
in its summer 2023 issue, Rare Revolution Magazine
published an article about Dave Jacob
Have a read
A new article has been published in the Keio Journal of Medicine providing an overview of recent advances in clinical research on rare hereditary skin diseases in Japan.
It shows efforts to uncover their pathogeneses, potential new treatment methods, current progress on establishing clinical practice guidelines and activities which have been undertaken to raise public awareness.
Collecting scientific evidence also aims to inform the creation and revision of evidence-based Clinical Practice Guidelines. (orphanews international 2023.07.26)
In its June 2023 issue,
ERN-Skin eNews mentionned ePAG Advocates
attending Globalskin meeting “Elevate”
and those who were honoured with an award.
Have a read
Twice a month, the French Federation for Skin publishes (in French) an new article on global issue of skin and dermatology.
Go and Have a look from time to time
Café Healthtech Podcast
25 – How Social Networks can help better understand Patient’s experience ?
After being left into the background for a long time, Patient’s experience has a more and more important place in health. We talk about interactions and emotions felt by patients when in the health system. This experience, many patients share it online and especially on social media. The data gathered on social media can then be used by heatl stakeholders to better understand patients’ needs and expectations. With over 3,8 billions social media users worldwide, it is clear that these plaforms quickly became an important source of data
Listen to the podcast (in French)