ABOUT US

The Foundation For Rare Diseases team

The team

A unique and original organizational model

The Foundation For Rare Diseases is composed of a team of professionals dedicated to accelerating research throughout France, in Paris and in the heart of the inter-hospital-university regions. The originality of this model allows it to work closely with research teams on a daily basis and to analyze the needs of the field, to offer personalized solutions and to bring together expertise.

The Foundation is a real link between all the actors in the field of rare diseases.

Pr Daniel SCHERMAN

Director of the Foundation For Rare Diseases

Professor Daniel Scherman is Director of Research of Exceptional Class at the CNRS. He is a Doctor of State in Science and an engineering alumnus of the Ecole Polytechnique. Daniel Scherman received in November 2017 the Grand Prize of the Academy of Sciences "Emilia Valori" for the Application of Chemical and Biological Sciences. He is a member of the European Academy of Sciences EURASC Head of the Division "Medicine and Life sciences".

In addition, Daniel Scherman has been distinguished with the following awards: Experimental Uveitis Research Award - Deutsche Uveitis Arbeitsgemeinschaft; Palmes Académiques; Laureate of the Grand Prix of the Académie Nationale de Médecine; Silver Medal of the CNRS; Research Prize of the Rhône-Poulenc Group; Neurobiology Prize of the Fondation pour la Recherche Médicale; Prize of the Institut de Biologie Physico-Chimique.

Daniel Scherman holds or has recently held the following positions:

Director of the Pharmaceutical Research Center of Paris, at the Faculty of Pharmacy, Paris Descartes University
President of the "Pharmacology-Engineering and Technologies for Health-Biomedical Imaging" section of the National Scientific Research Committee
Vice-Chairman of the European programs " Horizon 2020 " ITN and FET-OPEN
President of the Prague Institute/SANOFI/Czech Academy of Sciences Pharmacology Award since 2006.
Founder and Director of the Chemical and Biological Technologies for Health Unit, CNRS-INSERM associated with the University of Paris Descartes and the Ecole Chimie-ParisTech.
Chairman of the Non-Viral Vectors Committee of the ESGCT, European Society of Gene and Cell Therapy. Member of the Scientific Council of the American Society of Gene Therapy ASGCT (3 mandates).
Responsible for the design and realization of vectors for the Phase I gene therapy clinical trial for the personalized treatment of wet age-related macular degeneration (AMD): FP7 Target AMD project.
Former Scientific Director then expert for the GENETHON Laboratory (2006-2009).

Daniel Scherman's scientific work has resulted in 450 published articles, including 350 in peer-reviewed journals, 63 books or contributions to books, 42 families of patents, 115 invited lectures at international conferences. This is reflected in the Web of Science by an impact factor h-index: 60 and by 14500 citations.

Daniel Scherman is, in addition, Editor of the "Handbook of Gene Therapy and Genetic Pharmacology", Imperial College Press, 2014.

Ms. Elena ZAHARIEVA

Research Administration Officer

Elena holds a degree in International Affairs from the American University in Paris with a specialization in sustainable development. She did her internships at WHO in Bonn, Germany and at UNESCO in Paris. After a professional detour towards private financial structures, Elena returned to the "social" field as a Management Assistant for Orphanet at the Rare Diseases Platform.

Joining the Foundation For Rare Diseases is for Elena a great pleasure and a continuation in this field that she knows and which is close to her.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.



Dr Magda GRANATA

Research Administration Officer

Following a Master's degree in Biotechnology, Magda obtained her PhD in Genetic and Biomolecular Sciences at the University of Milan (Italy) studying the cellular response to DNA damage.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.



Ms. Nouara BENAÏ

Administrative Manager

Nouara has been working at the Foundation since March 2015. Nouara's studies in literature and languages, combined with her experience living abroad (Egypt and Spain), led her to work in the print and radio media (Livres Hebdo, Bayard Presse, RFI, Reporters d'espoir and l'Express, with whom she still collaborates) and in internal and institutional communication (Ministry of the City within the Bartolone cabinet, various municipalities in the Ile de France region, Centre international du Crédit Mutuel).

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.



Dr. Pascale Milani

Communication and Philanthropy Manager

Pascale joined the foundation in September 2022 after a scientific career at the ENS in Lyon. With more than 14 years of experience in scientific research and entrepreneurship, and a strong taste for communication and public relations, she now puts her skills at the service of the Fondation Maladie Rares.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.



Dr Pauline NAUROY

Responsible for national scientific actions, responsible for the Alsace - Côte d'Or region

Pauline joined the foundation in January 2022. Sensitized to rare diseases since her childhood, she first turned to biology through a thesis in Lyon and then worked on a rare skin disease during a post-doctorate in Germany.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.



The regional managers

Dr Arielle PECHE

Regional Manager for Île-de-France, Tours and Orléans

Arielle joined the Foundation in January 2024 after several years in a research laboratory. Sensitized to genetic diseases as a child, it was quite natural for her to pursue a Master's degree specializing in tissue, cell and gene biotherapies, before going on to write her doctoral thesis on the pathophysiological mechanisms of a rare disease.

After 6 years of research in Belgium and Paris, Arielle continues her commitment to rare diseases by putting her skills at the service of the Foundation.



Dr Christine FETRO

Head of research and industrial partnerships, Regional Manager Auvergne Rhône Alpes

Christine has been working at the Foundation since March 2015. Christine is a pharmacist by training (Thesis in clinical pharmacy - Montreal) and holds a master's degree in international regulatory affairs. After a 20-year career in hospital and industry, Christine brings her experience as a medical affairs manager in industry and her medico-regulatory expertise to the Foundation.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.



Ms Gaëlle DOMBU-SMEETS

Regional Manager North

Gaëlle is an engineer in life sciences (ISA Lille) and holds a Master's degree in international development (IRC Montpellier SupAgro). For nearly 10 years, she has held positions in project management and fundraising within NGOs in France and in sub-Saharan Africa. Her associative career has been dominated by the realization of development programs aimed at improving the living conditions (access to health, food, education, and training) of people in vulnerable situations. In order to use her skills in developing public and private partnerships, and to specialize in the field of rare diseases, Gaëlle then joined the AFM-Telethon. Gaëlle joined the Foundation in December 2017 as Regional Manager West.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.



Dr. Laura BENKEMOUN

South West Regional Manager
Association Research Advisor

With a PhD in Genetics, Laura has 10 years of experience in basic research, in France and Canada. After a re-orientation towards project management with an advanced certification from Centrale Lille, she joined the Foundation in 2014. After 7 years as Regional Manager East and co-leader of the Human and Social Sciences PAA, Laura now holds the position of Regional Manager South-West and the national position of Research Advisor to the associations.

She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation.



The Foundation's headquarters are based in Paris, within the Plateforme Maladies Rares, a resource center unique in Europe, which brings together on the same site representatives of patient associations and public, French and European stakeholders.

Find the right contact in your region