“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.

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)

 

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)

Teachers’ role in the inclusion of students with rare diseases

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A new study published in “Frontiers in Psychology” investigated the different teaching variables which affect the inclusion of students with rare diseases. In education, as in other fields, those students have specific needs. These needs are often unmet, due to a general lack of education of teachers and the wide variety of rare diseases. Data collected from the questionnaire filled in by teachers in La Mancha (Castille-Spain), shows that while they were in favor of including students with rare diseases, as a whole, they lacked the requisite knowledge about their specific needs. These results indicate that specific training and resources to offer bespoke educational responses to students with rare diseases are needed. If teachers are more aware of the specific challenges facing these students, their needs will be better addressed and their wellbeing will be improved. (orphanews 2023.01.31)

Youtube with “Tibo InShape”

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New video

Cécile was interviewed by #Tibo InShape on his youtube page.

A very serious, but joyful, moment that also allowed us to open an online funding page

 https://www.leetchi.com/c/cutis-laxa-international