31 May 2012

Our advocacy

Illustration for article: Our advocacy
AFM-Telethon has played a unique and decisive role in the recognition of rare diseases as a public health issue.

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.

Three 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. A third one has been launched in 2018.

European awareness

AFM-Telethon also was behind the creation in 1997 of the European collective, Eurordis, the voice of rare disease patients in Europe and the world. The Telethon’s funding guarantees the structure's operation and independence. Today Eurordis is an alliance of 984 national patient organisations from 74 countries. Its role was decisive in obtaining European legislation favorable to the development of drugs for rare diseases through adoption of the Orphan Drug Act in Europe in 1997.  Eurordis promotes implementation of national policies dedicated to research and development of treatments for rare diseases and advocates for equitable access to these treatments.

AFM-Telethon and Eurordis contributed to the adoption on June 8, 2009, of a European Council recommendation asking each Member State to implement national plans or strategies focused on rare diseases. With the support of AFM, Eurodis has created the World Rare Disease Day in which more than 100 countries participate on the last day of February. Eurordis and Rare Disease International, another alliance of patient groups, have been instrumental in raising awareness of rare diseases as a global public health issue. 

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.