Reaffirming at all levels the commitment to and participation of users

/in , , /by

In an article published on 12th December 2023 on the occasion of the National Health Strategy, the High Anthority for Health identified four topics which require much effort and progress :

  • Promoting the commitment to and the participation of users with health professionals ;
  • Effectiveness of individual rights recognised in the laws of 2002 and those adopted afterwards;
  • Representation of users by agreed organisations ;
  • Reinforcement of users‘ knowledge.

 

For us, CLI, these four topics, to which must be added the lack of volunteers and financial means, are the main topics to work on during the coming years if we want to protect the survival of all voluntary organisations.

5th National Conference of the French Federation for Skin

/in , , , , /by

5th December 2023 :

the French Federation for Skin organised its 5th National Conference,

in preparation for the Dermatology Days of Paris (JDP).

It was a great success with the opening by Senator Philippe Mouiller, Chair of the Commission for Social Affairs,

and the presence of representatives from various authorities in the field of Health.

Four round tables allowed an exchange on the future of dermatology,

teledermatology,

democraty in health

and patients’ role in research.

(listen to the replays here, in French)

It was also the occasion to present the achievments of the FFP in 2023 :

Disability Guides and Booklet for children you can download below (in French)

Guide handicap peau_web    Guide patients handicap peau_12-23_web

ESOSP-Maladies de peau

« United for Health»

/in , /by

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

/in , , /by

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

/in , , /by

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:

/in , , /by

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

/in , , , /by

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)

/in , , , /by

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…….

/in , , , /by

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

:

Articles of the French Federation for Skin

/in , , /by

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