The economics of delayed diagnosis in the United States:

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)

Visible Disorders of the Skin

Rare Revolution Magazine

in its summer 2023 issue, Rare Revolution Magazine

published an article about Dave Jacob

Have a read

Japan: Recent advances in rare skin diseases

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


Articles of the French Federation for Skin

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


Podcast Pierre Fabre-Kapcode « How Social Networks can help better understand Patient’s experience

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)



Cécile on the radio



Cécile was interviewed on the French Radio “Europe 1” in Olivier Delacroix’s broadcast “Free on-air : No judgement, no taboos, an open conversation” (in French)

read this article (in French)


England recently published its 2nd Rare Diseases Action Plan:

the main aims of this Action Plan are to implement the key priorities outlined in the 2021 UK Rare Diseases Framework. : to help patients get a final diagnosis faster; to increase awareness among healthcare professionals; to improve the coordination of care;     to improve access to specialist care, treatment and drugs.  (orphanews 2023.03.30)