[ad_1]
55 measures to combat rare diseases and improve the care of the people concerned. This is proposed by the new plan for rare diseases announced Wednesday, July 4, by the Ministry of Solidarity and Health. It will be endowed with 700 million euros, of which 20 million will be specifically dedicated to research.
[Communiqué] The 3rd national plan on #MaladiesRares 2018-2022 carries an ambition: to share innovation, diagnosis and treatment for everyone. >> https://t.co/1uI8sArrAc
cc @MinSoliSante https://t.co/5fOIQY50QS– Sup-Recherche-Innov (@sup_recherche) 4 July 2018
Three million patients in France
L The rarity of a disease is defined according to European legislation by a prevalence of less than one threshold of 5 people per 10,000, when one pathology affects one in 2000. 80% of them are genetic. In half of the cases, children under five are affected. There are about 7,000 rare diseases in France, for about three million patients.
Eleven Areas for Improvement
Two national rare disease plans have followed one another since 2004 – the last one was completed in 2014. This new plan, called PNMR3, must "reverse the diagnostic wandering and we position at the head of the organization of care and research in Europe ", according to Health Minister Agnès Buzyn. Eleven areas for improvement have been defined. They concern in particular the improvement of the diagnosis because often patients wait years before knowing which disease they are suffering from, what is called diagnostic wandering. The diagnostic impbade concerns cases where the precise cause of the disease is not identified. To facilitate research, the sharing of data will also be developed.
Patient care should start at the latest one year after their first consultation with a specialist, against an average of five years today for 25% of patients. between them. Neonatal screenings will be strengthened too. The PNMR3 aims to better support patients and their families, first by making information more accessible through certain platforms such as Orphanet, Rare Diseases info services, etc., and by better supporting people with disabilities related to their illness (access to benefits, special devices and rights)
French leadership
In France, there are 23 rare disease sectors, 110 established networks, 387 reference centers and 1,800 centers of expertise. The ministry mentions a "French leadership" that it wants to reinforce, notably by a French research program devoted to diagnostic impbades realized in connection with other European and world initiatives. This plan was realized by Professor Yves Levy, president of Aviesan and husband of Agnès Buzyn and Sylvie Odent, head of the department of clinical genetics of the University Hospital of Rennes.
Interested in this subject? Come and discuss it on our forum!
[ad_2]
Source link
