Patient Representatives at Globalskin Meeting

1st – 2nd  June 2023

International Alliance of Dermatology Patient Organisation (IADPO-Globalskin)

held its “Elevate  Conference 2023” in Brussels

Such a pleasure to meet again face-to-face …. at last ….

Worlwide Patient Organisations were represented for two days of work and great times together.

Here are some of happy times we had before we publish the report of all our hard work.


Inter-Organisations’ contribution to the Local Projects for Health (PRS)

The French Federation for Skin (FFP), the French Society of Dermatology (SFD), the National Union of Dermatologists Venereologists (SNDV), the Network for Rare Skin Disorders (FIMARAD), the French Federation for Continuous Training and Evaluation in Dermatology Venereology (FFFCEDV), as well as the association of Future Dermatologists Venereologists in France (FDVF) pulled the communication cord :

Dermatology is on the brink, an alarming situation in France.  The WHO (World Health Organisation) has classified skin disorders as the 4th most impacting disorders regarding patients’ quality of life. Yet,  anywhere in French, skin disorders encounter an intersectional group of difficulties : No access to care in several regions, several months’ delay to get an appointment in town and in hospital, alarming medical and paramedical demography, therapeutic and diagnostic roving leading to loss of opportunities and refusal of care, social inequities in health, and more.

A recent study led in 316 Prefectures and Sub-prefectures (both local regional political and administrative centres) showed that dermatology is one of the first specialist area of medicine for which getting a first appointment is almost impossible.

Patients and their families feel like they are left behind et health professionals feel helpless when face with growing difficulties. Yet, in the past few years, dermatology treatments have seen a real revolution and should allow, with correct care, to cure many conditions efficiently and much earlier.

Despite these alarming findings, skin disorders are totally absent in today’s main local health priorities.  The coming review of the PRS is a unique opportunity to correct this omission and finally take into account the needs of the populations concerned.

Action must be taken urgently !


3 headings and 14 propositions are included in this contribution to turn this crisis around.


-1- Make access to care a Priority

     Train more dermatologists venereologists by increasing the number of interns in dermatology.

    Re-establish skin healthcare in hospitals in all French regions.

    Create the post of Advanced Practice Nurse (IPA) in all hospital dermatology departments.

    In areas where skin care is limited, encourage retired private dermatologists to pursue their activities for a few years beyond retirement age.

    Develop online dermatology expertise, and prioritise the worst regions where care is very limited or absent.

    Create positions for psychologists in hospital dermatology departments.

    Re-assess upward the complexity of skin treatments that nurses are allowed to deliver.


-2- Make dermatology care pathways more fluid

     Co-develop, together with health professionals and patient organisations, care pathways more readable and clarify the various levels of intervention (1st consultation, specialised care, complex care).

    Train « 1st step » health professionals in dermatology and provide them with the minimum equipment necessary (dermatoscope, biopsy equipment, online tools, etc.)

    Strengthen the co-ordination between 1st consultation and specialised care based on local measures and systems that were already well-tested (especially online expertise, specialised skincare teams)

    Reinforce the link town-hospital, especially supporting and increasing the fees for hospital consultations delivered by private dermatologists.

    Lead, with the support of patient organisation, advertising campaigns and awareness raising for patients to encourage them use the health system in a more responsible way :

o   reduce the number of missed appointments.

o   Limit the number of annual «  check-up » appointments for people who are not at risks or with no particular symptom.


-3- Provide greater support to health professionals and patients

     Support the deployment of medical assistants to give doctors more medical time for patients.

    Set up, together with professional organisations, a support system for health professionals facing working difficulties (preventing chronic work-related stress, work-life balance, etc).

“Patient Education Program (PEP)”

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:

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


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

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

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 ! »

read this article (in French)