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Welcome on the French Website about Moebius Syndrom.


National plan for rare diseases: following the meeting on 02/02/2006

The goal of the meeting entitled “National plan for rare disorders 2005-2008: situation at one year + prospects” organised by the French department of health on 2 February 2006 was to give an idea to people of advancing for rare diseases since 2005 and things to be done in the future to take into account remarks of heath professionals and representatives of patients.

The first part of the meeting was about “Information to patients and health professionals”. A web site called “http://www.orphanet.org” is dedicated to information about rare disorders online (the translation of all documents has been done in English, German, Spanish and Portuguese). Dr Ségolène Aymé explained that more and more physicians visits are observed on “orphanet” in order to collect addresses of patient support groups. Then Mrs Camille Cochet, responsible of the management of Maladies Rares Info Service [+(33) 810 63 19 20], spoke about this free phone line trying to listen, to inform and help people having to deal with rare disorders. Dr Lydia Valdès finally informed people about the new individual card of care tested on people suffering from 6 selected rare disorders. One of the aim of these cards was to inform professionals working in emergency unit about what to do when taking in charge patients diagnosed with rare diseases.

The second part of the meeting was about “research and epidemiology”. Results of programs of clinical research in hospital units in 2005 were presented by Dr Jean-Pierre Duffet. On 84 projects granted, 24 were about rare disorders. After the short talk of Dr Elisabeth Tournier-Lasserve about the participation of GIS-Institut Maladies Rares to National Plan 2005-2008, Pr Stanislas Lyonnet responsible of the National Plan at the National Agency for Research (ANR) presented grants given to clinical research projects in 2005. In conclusion of this second part, Dr Jean Donnadieu tried to explain the impact of epidemiology on the knowledge of disorders and what the national Institute for sanitary surveillance is going to do until 2008.

The third part was about “good practice, standards of care” with presentations of Dr Olivier Obrecht representing health authorities and explaining what will be done to reimburse all exams performed in usual need of care of patients suffering from rare disorders. Dr Françoise Weber’s speech was about orphan drugs and the need for clinical trials of high quality.

After lunch, the main part of this meeting was about the labellisation of reference centres dedicated to one or several rare diseases. Pr Marc Brodin, President of the Consultative National Committee for labellisation, explained that more than 100 hospitals will be granted before December 2006, to simplify the diagnosis of rare disorders and define strategies to treat patients, to define and diffuse protocols of care, to co-ordinate research projects, to participate to actions of formation and information for health professionals but also patients, to communicate with patient support groups. Of course, it won’t be possible to take into account all rare disorders with 100 centres only. As a consequence, it will be necessary to have regional corresponding heath professionals for the treatment of rare disorders at proximity of patients.

The last session was about European Prospects, with the plan of European Centres of reference for rare disorders in discussion. Mr Yann Le cam told the participants, that the French plan had had impacts on politics on rare disorders in Germany, Italy, Spain, and Luxembourg.

Finally, Mr Xavier Bertrand, Head of French Department of Health, explained that a lot needs to be done and that it is one of the priority in term of health politics.

The 12nd february 2006
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