France’s patient advocacy network is one of Europe’s most well-developed and formalised. Patient advocacy groups – including the three featured below – fill in research, care, and support gaps left by private industry and the state while elevating the concerns of the most important people within healthcare: patients and their caregivers.
Rare Diseases – Stronger Together
The French Muscular Dystrophy Association (AFM-Telethon), is one of France’s best-known patient organisations, bringing in around EUR 90 million every year from its annual telethon event and making a major contribution to France’s globally-recognised efforts to fight rare diseases.
AFM-Telethon established Genethon, a non-profit research organisation dedicated to rare genetic diseases in 1990, and was central to the creation of France’s first National Plan for Rare Diseases (PNMR1) in 2004.
“To be direct: most elements of the rare disease ecosystem in France were initiated by AFM,” proclaims the group’s vice president, Francois Lamy, himself the father of a child with the rare condition Duchenne muscular dystrophy.
“From the very first Téléthon in 1987, a fundamental principle has guided our approach: fragmentation serves no one. We understood that if each rare disease created its own organisation and collected modest sums independently, we would accomplish nothing beyond communication expenses.”
To this end, AFM-Telethon helped launch the French Rare Disease Alliance, as well as a European grouping – EURORDIS – enabling smaller organisations to access resources whilst providing a collective voice for advocacy with public authorities. “Two hundred associations possess no influence if they speak disparately; united, they become formidable,” states Lamy.
Paediatric Cancer – The Quest for More Options
Like many working in patient advocacy, Patricia Blanc never planned to enter the sector. However, an intense personal tragedy – losing her daughter, Margaux, to an aggressive brain tumour in 2011 at the age of 13 – moved Blanc and her husband to found Imagine for Margo and find solutions to the devastating but under-researched field of childhood cancer.
“What struck us most was not only the absence of options, but the realisation that these were essentially the same treatments that had been used for decades, despite the aggressiveness of childhood cancers,” explains Blanc, who raised EUR 100,000 for paediatric cancer research during Margaux’s 16-month illness.
“Paediatric cancers are rare and fragmented across more than 100 different diseases, which has long slowed research and discouraged investment,” she explains. “Adolescents like Margaux were particularly overlooked, often falling between paediatric and adult treatment frameworks, with very limited access to clinical trials. We spent months searching for alternatives across Europe and the US. There were none, not because the science did not exist, but because it had not been developed for children. That sense of injustice was impossible to accept.”
Propelled by this inequity, Blanc and the Imagine for Margo team have expanded beyond France’s borders, launching Fight Kids Cancer in 2020, a European model that pools funding across countries to support larger and more ambitious research programmes. Fight Kids Cancer allocated EUR 12 million to paediatric cancer research projects last year, with over EUR 42 million committed since its inception.
“In rare paediatric cancers, progress depends on pooling patients, expertise, and data across borders,” says Blanc. “Without that scale, innovation simply moves too slowly. Pooled, multi-country funding reduces inequality, accelerates trial activation, and gives researchers the confidence to plan for the long term.”
Alzheimer’s Disease – Beyond Medicine
Alzheimer’s Disease – and the slow and painful loss of memory and understanding that comes with it – is a devastating drain on affected individuals, their caregivers, and society. The past three years have seen regulatory approvals for new disease-modifying medicines for Alzheimer’s, but their efficacy is limited and availability limited, meaning that daily care and engagement with patients remains of utmost importance.
This is driving the work of France Alzheimer, a 41-year-old patient organisation supporting the roughly 1.4 million people in France affected by Alzheimer’s or related diseases. While France Alzheimer does allocate between EUR 1.5 and two million to medical research every year, it is in daily support that it is having the greatest impact today
“We are the only association providing comprehensive daily support to both patients and caregivers through workshops, individual consultations, and specialised programming for patients, caregivers, and couples together,” says Benoit Durand, France Alzheimer’s general manager.
“Until lasting solutions are discovered, the daily support we provide remains essential,” agrees President Joel Jaouen. “We have learned that progress does not always come through medicine alone, but also through imaginative programmes that bring stability and dignity to patients’ lives. Whether through therapeutic holidays, animal-assisted activities, or large community events like the Memory Run, our guiding principle is clear: life does not end with a diagnosis. Patients and families deserve continued support, creativity, and hope.”
