31 May 2012

Our advocacy

Illustration for article: Our advocacy
AFM-Téléthon works to ensure that public authorities assume their responsibilities relating to rare diseases and disability. It works to obtain recognition of rare diseases as a priority for public health and the French law of 2005 on disabilities.

A combative association

To live a normal life in spite of disease and disability assumes that one is recognised as a full member of society. This is why AFM-Téléthon's patient assistance mission includes an activist section. On this front, as with others, AFM-Téléthon- works with partners.

Two rare disease plans

With the French Alliance Maladies Rares (Rare Disease Alliance - a group of patient associations), it has played a leading role in passing and drafting the first National Rare Diseases Plan launched in 2004. Now considered to be a European model, this plan has achieved two major advances. For instance, public authorities have awarded certifications to reference and skills centres (hospital teams specialising in different rare diseases), which leads to improved diagnosis and patient care. Further more, they have invested more in research into these diseases. A second plan, in which AFM-Téléthon was also involved, took over in 2011. AFM-Téléthon is now showing support to launch a third plan in 2017 to take over the second one which ends at the end of 2016.

European awareness

The association has also fought to promote a European policy for rare diseases, essential to accelerate research and the development of treatments. It co-founded Eurordis, the European Organisation for Rare Diseases. In June 2009, the first step was taken: The European Union has asked every member state to develop a rare diseases plan by 2013.

A law on disabilities

AFM-Téléthon was also involved in drafting the Law of 11 February 2005 for equal rights and opportunities, participation and full membership of society for people with disabilities, which has led to significant progress: the right to compensation for a disability, i.e. providing the necessary assistance for people with disabilities (equipment, care givers, assistance dogs...) and also the right to education for children and the obligation to make all public places accessible by 2015.