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)

Dermatology and Venereology Meeting 2023

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2nd & 3rd March 2023 :

The National Union of Dermatologists-Venereologists (SNDV) organised a Dermatology Venereology Meeting (RDV 2023) in “La Cité des Sciences” in Paris.

 

The French Federation for Skin (FFP) stall was held by Hélène Raynal, the Secretary.

 

During the roundtable « Information and awareness : Prevention a priority, at last », Marie-Claude Boiteux spoke as patients’ representative and brought forward patients’ contribution to further raise awareness.

 

These two days ended beautifully with a cabaret show offered by the SNDV.

The ethics of prenatal diagnosis

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A recent article published in “Maternal Health, Neonatology, and Perinatology” describes various ethical issues associated with prenatal diagnosis. “Prenatal diagnosis” is an umbrella term encompassing a range of genetic tests which are conducted prior to birth.

These procedures vary in risk level and invasiveness, but all aim to detect any genetic disorders present in the foetus. They can be divided into two categories: preimplantation genetic testing, and prenatal diagnostic procedures during pregnancy.

These procedures generate a large amount of data which may not be well-communicated to couples. Prenatal diagnostic procedures findings can be difficult for parents to interpret and their decisions may therefore be made on the basis of misconceptions about the likelihood or potential severity of a condition.

Moreover, many of the applications of prenatal diagnosis are themselves ethically controversial, and are the subject of significant debate. Overall, there is a need for clear guidelines on the use of prenatal testing.

(orphanews 2023.02.28)

Monthly newspaper « Le Trombinoscope » – dossier on Rare Disease Day « patients face taxing times and their organisations too ! »

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read this article (in French)