“Patient Education Program (PEP)”

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20th & 21st April 2023,

ERN-Skin organised its Scientific Days on the topic: “Patient Education Program (PEP)”. As defined by the OMS-Europe report  it « aims to help patients gain or keep the competencies they need in order to better manage their life with a chronic disorder. It is an integral part, and on a permanent basis,, of patient care ». Since 2009, PEP has been legally defined in France. The long French experience in this field could be an example to implement PEP in other European countries.

Cécile on the radio

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2023.04.19

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)

https://www.europe1.fr/emissions/La-libre-antenne/cutis-laxa-cecile-est-enfermee-dans-un-corps-qui-parait-le-double-de-son-age-4178912

read this article (in French)

 

England recently published its 2nd Rare Diseases Action Plan:

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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)

 

« Taking stock of the dermatology care in France »

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On 28th March,

the National Union of Dermatologists Venereologists (SNDV) published a press release about « Taking stock of the dermatology care in France » : unlike generally accepted ideas, amplified by the distorting mirror of social medias, medical activities of private dermatologists are above all clinical and surgical. Thus, over 2,500,000 medical treatments are made each year by 3,600 dermatologists, of which 2,700 are private, according to statistics published by the National Board of Health Insurance (CNAM). These medical treatments mostly concern the care of skin cancers and chronic inflammation skin disorders.

VISIBLE DISORDERS OF THE SKIN

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Podcast « Visible disorders of the skin » :

Visible disorders of the skin, whatever they are, draw gazes and induce various degrees of stigmatisation. This is the starting point of the VDS Programe with 3 big inititives : and epidemiology and prevalence  survey with 13138 respondants from 6 countries in late 2020, a Social Media Listening study thaht analysed over 20,000 messages posted on social medias during 3 years, and an application Patient Emotion App. to learn more about this study :    • Les Maladies Visi…  

Initiated by Patient Centricity Dpt at Pierre Fabre Laboratories.

Open up your ears and change your gaze on Visible Disorders of the Skin (in French)

Dermatology on the brink

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IN THE MEDIA

An article was published in the online pages of the French newspaper Le Monde on Saturday March 13th, 2023

This article, is written and signed by the French Federation for Skin together with The French Dermatology Society (SFD), the Union of French Dermatologist (SNDV), the French Network for Rare Skin Disorders (FIMARAD) and the Federation for Continuous Training in Dermatology (FFFCEDV).

They call on the government to take account that dermatology patients and health professionals are greatly worried by the situation of Dermatology in France.

 

Read the article (in French)