Eurordis is now 10 years old. What really IS the bedrock meaning of our action, our raison d’être, our ultimate aim? Might it be to change the way people and society look at people living with rare diseases? And to create social ties, a context for the pursuit of individual and collective life and happiness? From lack of power to empowerment. Replacing the following tragic equation Isolation + Silence + Exclusion + Desperation = Death by a new one favouring life: Union + Voice + Solidarity + Hope = Life. Fighting isolation and testifying publicly, even for the rarest diseases and the less wealthy countries in Europe. Bringing together patient groups and patients and their families to reach a critical mass able to intervene in the development of public policies and to take part in the decisions that concern them. Involving people living with rare diseases in the development and the organisation of actions launched to serve their interest. Building relationships based on empathy, care for each other, respect, truth, and commitment. All these virtues contribute to the quality of the relationships within our patient community.

Let us draw on our experience of living with a rare disease to define our ethics. Only these ethics, this concern for each other, this judicious selection of exactly the right actions to take, can push Eurordis towards excellence. Let us praise what makes each of us different, our variety of diseases and cultures; let us celebrate the uniqueness of our children, our relatives, our beloved ones. The diseases they suffer from hamper their breathing and sight, their walking and growing, their learning and working, and their ability to live like any other citizen. Our movement designs and implements solutions to address these disabilities. Our role is to remind society of its duty, relentlessly: to do more for people who have less, for the orphans of our health system, for our most vulnerable ones.

Yann Le Cam
Chief Executive Officer

The Rare Disease Patient Solidarity Project (RAPSODY) and its partners are creating several online services aimed at improving the lives of rare disease patients. One of these services involves a European Network of Therapeutic Recreation Programmes (TRPs). Therapeutic Recreation Programme is any formally or informally organised recreation activity (e.g summer camp, ad hoc trip) which has been set up with the needs of children or young adults with rare diseases in mind. If you believe that your organisation is running a TRP, we would be grateful if you could click here and respond to our survey.

Eurordis is Seeking Corporate Partners

Eurordis is seeking corporate companies within and outside the healthcare industry to build common actions and develop a partner relationship over the medium to long term. What we are looking for includes logistical and financial support, skills, time, as well as communication, fund-raising and translation support. If you are interested in becoming a partner of Eurordis, please contact Jerome Parisse- Brassens, Communications and Development Officer: jerome.parisse-brassens@eurordis.org

European Research Council: Call for Proposals for Young Investigators

The European Research Council (ERC) has launched its first call for proposals to fund the next generation of independent research leaders in Europe. It targets young investigators (2-9 years since completion of PhD) who are about to establish or consolidate an independent research team or to start conducting independent research in Europe or an associated country. Approximately 200 grants of 500,000 - 2,000,000 euros will be awarded for up to 5 years. Applications should be made online. The deadline for applying is 25 April 2007. For more information and to apply: http://erc.europa.eu

Treatment of malaria
Artesunate

Treatment of Leber's hereditary optic neuropathy
Idebenone

Treatment of Duchenne muscular dystrophy
Idebenone

Treatment of Friedreich ataxia
Idebenone

All Orphan Drugs in Europe (in English) >

European Public Assessment Reports (EPARs)(multilingual) >

Editorial Team: Yann Le Cam, Jérôme Parisse-Brassens (Editor and Writer), Julia Fitzgerald, Nathacha Appanah (Writer), David Oziel (Site of the Month), Anja Helm, François Houÿez

Translation Team: Conchi Casas Jorde (Spanish), Ana Cláudia Jorge and Victor Ferreira (Portuguese), Roberta Ruotolo (Italian), Trado Verso (French), Ulrich Langenbeck (German)

© 2007 Eurordis