« United for Health»

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It is a Parlementary club established after a survey made by the NGO « Action Santé Mondiale » ( https://www.actionsantemondiale.fr/enquete-parlementaire-inedite-menaces-sanitaires/)  This parlementary club wants to be a link between national representatives and civil society actors by proposing :

  • A place to meet and dialogue with health and world challenges experts : scientists, leaders of UN Organisations, NGO or Think Tanks agencies, aactivists and other stakeholders.
  • A better framework to watch at the heart of the problems, thanks to visiting Health International Organisations and taking part in study travels.
  • A plateform offering contents and tools to help deputies’ work.

Canada establishes rare disease Advisory Group

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The Government of Canada has announced the establishment of an Implementation Advisory Group (IAG) for drugs for rare diseases.

The creation of the National Strategy for Drugs for Rare Diseases will aim to improve consistent access and affordability of effective drugs for rare diseases.

Over the next three years, the IAG will provide a forum for patients and stakeholders to exchange information, provide patient-centered advice and exchange, and establish best practices for the implementation of the National Strategy.

(orphanews International 2023.11.20)

Psychosocial needs of children with rare diseases and their families

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A new article has been published in the Orphanet Journal of Rare Diseases which explores the day-to-day experiences of children living with rare diseases and their parents, as well as their needs and current pathways to psychosocial supports.

Five main themes : daily life with an RD; experiences with the health care system; psychosocial support; difficulties and barriers; and improvements for patient-oriented support were addressed during semi-structured interviews with young people with RD and parents of children with RD.

Overall, diagnostic delays and a lack of physician education, as well as time, socio-legal, and organisational problems all caused stress and negatively affected mental wellbeing.

Despite recent advances in awareness and care, RD still represent a great challenge for all those affected by them and their families.

(Orphanews International 2023.10.16)

The economics of delayed diagnosis in the United States:

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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)

World Skin Health Day

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14th September 2023 :

World Skin Health Day, organised by the French Society of Dermatology (SFD).

 

The first part of the day was dedicated to Skin Disability and Marie-Claude Boiteux testified during the round table on this subject.

Pr Marie BEYLOT-BARRY presented with the impact of dermatological disorders on quality of life

It also was the occasion of an interview for the SFD.

Find the replays here (in French)

GLOBAL RESEARCH ON THE IMPACT OF DERMATOLOGICAL DISEASES (GRIDD)

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If you are a dermatology patient THIS IS VERY IMPORTANT

You are invited to take the GRIDD Survey now and share it with anyone who can take part!

On June 5, 2023, GlobalSkin, in collaboration with Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany), launched the Global Research on the Impact of Dermatological Diseases (GRIDD) Study.

Launched with the aim of engaging 10,000 participants, the GRIDD Study takes 10-20 minutes to complete and is accessible in 17 languages.

The data collected will help to validate the need for improved care, better treatment options, and more affordable medicine for dermatology patients globally.

The GRIDD Study is open until September 28, 2023.

AND ALSO…….

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25th November 2022 : The Triathlon of  Sireuil presented CLI with a cheque

24th January 2023 : Workgroup on recognising the value of the work done by volunteers

02nd February 2023 : Working on the French Local Projects for Health

14th February 2023 : Eurordis Black Pearl Awards

9th June 2023 : European Workgroup on Pregnancy and Family Planning

22nd June 2023 : BMS SpotInfoPatients  “From Patients’rights to how Patients can commit in the Health system”

26th June 2023 : Eurordis Webinar : Patient Partnership Framework in ERNs

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Articles of the French Federation for Skin

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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

Actualités

 

Patient Representatives at Globalskin Meeting

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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)

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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).