Oncology and rare diseases: accelerating access to innovation for patients
France’s decline in healthcare innovation is no longer a hypothesis — it is already happening. While therapeutic innovations are progressing rapidly worldwide, France is struggling to translate these advances into tangible benefits for patients. It is in this context that GenR was launched: a non-political societal coalition bringing together, in strict parity, healthcare industry leaders and patient and caregiver associations, with a clear ambition: to put health research and innovation back at the center of public debate and national priorities ahead of the 2027 presidential election.
The gap between scientific progress and access to medicines: a unique founding coalition speaks out
GenR’s uniqueness lies in its founding structure, designed from the outset as a joint initiative with equal representation of industry stakeholders and patient, caregiver, and foundation organizations.
All share a reality that has become increasingly unacceptable: although therapeutic innovations — particularly breakthrough innovations in oncology and rare diseases — are multiplying, they too often remain inaccessible to patients in France. This gap between scientific progress and patient access to medicines can no longer be accepted.
The founding organizations — Fondation A.R.C.A.D., ARSLA, Association Laurette Fugain, Biogen, CERHOM, Chiesi, Imagine for Margo, IRIS, Patients en Réseau, Pfizer and Servier — represent millions of patients[1][2] and their families, communities of researchers and healthcare professionals, as well as companies committed to therapeutic innovation. Together, they have chosen to unite to deliver a strong collective message and bring this issue into the public debate.
A shared observation: France’s decline has a human cost
The work carried out by GenR’s founders leads to a clear conclusion: France is losing ground in clinical research, innovation, and access to treatments, with direct consequences for patients.
In ten years, France has gone from being a European leader to ranking third in clinical research. National research investment remains limited to 2.18% of GDP, well behind several neighboring countries (European Commission, 2024) and far below the European target of 3%. In addition, patients face long delays before new medicines reach the French market: on average, nearly 570 days are needed for a drug approved at the European level to become available in France, compared to 128 days in Germany. Behind these delays are lost time and lost opportunities, particularly for patients with cancer and rare diseases, where innovations are numerous.
An ambition: making health research and innovation a public policy priority
GenR aims to break down silos between research, clinical practice, industry, associations, and public decision-makers in order to establish a shared assessment and co-develop practical recommendations serving the public interest.
Rare diseases and oncology are priority areas of mobilization, as they are fields where innovation is particularly dynamic. GenR raises a central question: how can faster and more equitable access to innovation be ensured while strengthening France and Europe’s attractiveness, health sovereignty, and innovation capacity?
A clear direction: challenging public policy choices ahead of 2027
GenR will lead a structured program of expert consultations, institutional hearings, and collective work, with the objective of publishing a public report and a focused list of concrete recommendations aimed at policymakers and presidential candidates.
GenR’s success will ultimately be measured by its real impact on public decisions and on patient access to innovation.
Governance ensuring rigor and independence
GenR is chaired by Professor Philippe Berta, former Member of Parliament, former president of the parliamentary study group on rare diseases, and emeritus professor of molecular biology.
The coalition benefits from the scientific patronage of Professor Jules Hoffmann, Nobel Prize laureate in Physiology or Medicine and member of the French Academy. It is supported by an independent scientific advisory board of 27 members, ensuring the scientific rigor of its work and the credibility of its recommendations.
The general secretariat is managed by DGA Group, an international public affairs and strategy consulting firm responsible for structuring and operational management of the coalition’s work.
GenR President Philippe Berta stated:
“The question is no longer whether France has the scientific capabilities to remain competitive, but whether it can translate its advances into concrete benefits for patients. With GenR, industry leaders, patients, and researchers have chosen to come together, as equals, to put health research and innovation back at the heart of collective decisions. Collectively, we have an obligation to deliver results.”
About the founding organizations
A.R.C.A.D Foundation : The A.R.C.A.D Foundation, recognized as a public-interest organization, supports research in digestive oncology and works to improve patient pathways, information, and screening for digestive cancers. It is a key player in this field, which affects more than 100,000 new patients each year, with approximately 40% still resulting in death.
ARSLA : Founded in 1985 and recognized as a public-interest organization, ARSLA is the leading French association dedicated to fighting ALS (Charcot disease). It supports more than 2,000 people each year, provides 1,500 technical aids, and funds around a dozen research projects annually.
Association Laurette Fugain : Since 2002, the Laurette Fugain Association has been fighting blood cancers such as leukemia. Created by Stéphanie Fugain in memory of her daughter Laurette, the association raises awareness — particularly among young people — about the importance of blood, platelet, plasma, and bone marrow donation as life-saving civic acts.
Biogen : Biogen is a biotechnology company pioneering scientific innovation, developing and delivering new medicines that transform patients’ lives and create value for stakeholders. Its approach combines deep biological understanding with bold, measured risk-taking to develop treatments where none exist or where improved therapies are needed.
CERHOM : CERHOM (Fin du canCER et début de l’HOMme) is a patient association founded under the leadership of Professor Fizazi, oncologist and department head at Gustave Roussy Institute. CERHOM supports patients, raises awareness, and advocates for access to therapeutic innovation for rare and complex diseases.
CHIESI : CHIESI is an Italian family-owned biopharmaceutical group providing innovative therapeutic solutions in three areas: AIR (respiratory diseases), RARE (rare and ultra-rare diseases), and CARE (neonatology and transplantation), as well as prevention. With more than 7,500 employees worldwide, CHIESI operates across the entire healthcare value chain in France. Certified B-Corp, the company is committed to improving patients’ quality of life responsibly and sustainably.
Imagine for Margo : Imagine for Margo – Children without Cancer was founded in 2011 by the parents of Margo, who died from a brain tumor at age 14. During her illness, they discovered that oncology research focused primarily on adult cancers, with pediatric cancers often considered rare diseases by industry stakeholders. During this time, Margo had launched an online fundraiser to support research into her disease. After her passing, her parents decided to continue her initiative.
Since 2011, Imagine for Margo has mobilized donations to accelerate research into childhood cancer. The association funds European programs aimed at better understanding pediatric cancers and developing innovative and more effective treatments for children, in partnership with leading cancer research centers in France and Europe.
Since its creation, Imagine for Margo has raised more than €28 million to fund 91 cutting-edge research programs and 127 innovative treatments, enabling more than 9,200 children to benefit from personalized treatments across Europe. The association also carries out numerous well-being initiatives in pediatric oncology departments and supports more than 700 families.
IRIS : IRIS represents patients in France living with primary immunodeficiencies (PID). These diseases affect around 5,000 people in France, about half of whom require lifelong treatment with immunoglobulins derived from blood donations.
Patients en Réseau : Patients en Réseau supports patients and families through Mon Réseau Cancer, helping them navigate daily life during illness. The association also promotes prevention, screening, clinical research, and patient involvement in healthcare decision-making.
Pfizer : Pfizer leverages science and global resources to deliver therapies that significantly extend and improve patients’ lives. The company focuses on quality, safety, and excellence in developing medicines and vaccines and works with healthcare professionals and governments worldwide to expand access to reliable and affordable healthcare solutions.
Servier : Founded to serve health, Servier is an international pharmaceutical group governed by a foundation and committed to having a significant societal impact. A global leader in cardiology, Servier aims to become a focused and innovative oncology player. Nearly 70% of its R&D budget is dedicated to targeted cancer therapies. The group also develops treatments in neuroscience and immuno-inflammatory diseases and provides generic medicines to improve access to care worldwide.
About the General Secretariat
DGA Group : DGA Group is an international consulting firm helping organizations protect and develop their activities in increasingly complex economic, political, and regulatory environments.
Drawing on the expertise of Albright Stonebridge Group, a reference in international strategy and commercial diplomacy, and supported by experienced teams in public affairs, institutional relations, and strategic communications, DGA Group helps companies and organizations anticipate, understand, and influence public policy challenges, reputation issues, and economic performance.