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=> Maladies rares
Published on : 2007-09-30 par Shane Lynam

Une maladie rare est une affection touchant un nombre restreint de personnes (faible prévalence), à savoir moins de une personne sur 2000 selon le seuil admis en Europe ; en France, on dit qu’une maladie est rare si moins de 30 000 personnes en sont atteintes. On dénombre environ 7000 maladies rares dont 80% sont d’origine génétique, mais chaque semaine, de nouvelles maladies rares sont définies. Les maladies rares concernent 3 à 4 millions de personnes en France, et près de 25 millions en Europe. Un grand nombre de ces pathologies sont aussi dites «orphelines» parce que les populations concernées ne bénéficient pas de réponse thérapeutique.

Ce dossier décrit les actions menées par le ministère de la Santé pour la prise en charge de ces maladies, et notamment les mesures destinées à faciliter la vie des personnes atteintes : organisation de la prise en charge des malades (soins, recherche, médicaments orphelins), intégration dans la vie scolaire et professionnelle, aides financières et humaines. Il indique les textes réglementaires qui régissent ces mesures.




=> Help Line Support on site training
Published on : 2009-10-14 par Shane Lynam

On the 9th of October 2009, the Help Line team visited Zalau Romania to train the respondants at the Romania Information Centre for Rare Genetic Diseases. The help line project is still at an early stage however the President of the centre, Dorica Dan is preparing an application for a national number. The respondants were trained on how to use all the functionalities of the site and invited to give their feedback on its ease of use. 




=> EMEA update
Published on : 2006-09-30 par Shane Lynam

EMEA's recommendation for the authorisation of two vaccines for influenza pandemic (H1N1) 2009

The European Medicines Agency EMEA has recommended the authorisation of two vaccines(Focetria, Peandemrix) for the Influenza Pandemic (H1N1) 2009.

The following information that the EMA has made public on this issue, including the product information for each vaccine, can be found on the following website:

htttp//www.emea.europa.eu/infuenza/home.htm 




=> Network Applications
Published on : 2009-09-30 par Shane Lynam

Eurordis is inviting all European Rare Disease Help Lines to apply to become a member of the newly launched network.

The European Network of Rare Disease Help Lines is inviting all European Rare Disease Help Lines to apply to become a member of the newly launched network. On the basis of the application we will be able to establish your level of development and grant you a membership suited to your needs.

 

 The documents shall be updated to the site in the coming week, however if you wish to receive a membership application, please contact shane.lynam@eurordis.org




=> New respite centre
Published on : 2009-03-09 par Shane Lynam

For Respite

New Centre based services currently being developed:

Cairdeas Respite (Physical and Sensory)
Clough Keating,
Red Hill, Patrickwell, Co.
Limerick
Contact: Orla Kennedy
Tel: 061 320075 Fax: 061 498079

Tullamore Autism Respite Service
Charleville Road,
Tullamore, Co. Offaly
Contact: Mary Conroy-Thoms
Tel: 087 9966493

Red House Respite Centre (Autism)
Red House, Red Hill,
Patrickswell, Co.
Limerick
Contact: Christine Henessey
Tel: 061 355125 Fax: 061 320049

Kilbane Adult Respite Service
Kilbane, Castletroy,
Co.
Limerick
Contact: Phil Atkinson
Tel: 061 335994

Navan Children's Respite Service
The Meadows, Athlumney
Navan, Co. Meath
Telephone: 046 9031505

Thurles Respite Service
76 Cluain Glas
Thurles, Co.Tipperary
Telephone: 0504 58755




=> About Rapsody
Published on : 2007-09-02 par Eva Stetter

The European Network of Rare Disease Help lines 


The Rare Disease Solidarity brought together Rare Disease Help line representatives from all over Europe to form a network which aiming to increase awareness, efficiency and best practice standards for its members. 

Read more ...