OUR team

The Foundation For Rare Diseases is composed of a team of professionals dedicated to research acceleration throughout France, in Paris and in the heart of the inter-hospital-university regions. The originality of this model enables 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 players in the field of rare diseases.

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.

Pr Daniel SCHERMAN

Director

Pr 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 ». Daniel Scherman has also received 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.

Mrs Diana DÉSIR-PARSEILLE

Head Reasearch Administration

Diana is working at the Foundation since May 2012. Diana holds a Master 2 research degree in molecular and cellular biology. Before joining the Foundation, she worked for 4 years as a research engineer in the European program EUNEFRON for the creation of databases of hereditary nephropathies. Diana joined the Foundation at its inception as an administrative and financial officer and then became responsible of the research administration.

Contact: diana.desir-parseille[@]fondation-maladiesrares.com 


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

Contact: elena.zaharieva[@]fondation-maladiesrares.com 

Mrs Nouara BENAÏ

Administrative Manager

Nouara is 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, the International Center of Crédit Mutuel). 

Contact: nouera.benai[@]fondation-maladiesrares.com 

Research Administration Officer

After 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 did a first Post Doc on the genetic basis of different mitochondrial diseases, and a second one at the Montpellier Cell Biology Research Center (CNRS), she joined a Parisian biotech startup as a Molecular Biology R&D Engineer, where she worked for 3 years.

Contact: magda.granata[@]fondation-maladiesrares.com 

Pauline NAUROY, PhD

Communication and Philanthropy Manager

Pauline joined the foundation in January 2022. Aware of rare diseases since her childhood, she first studied biology with a PhD in Lyon and then worked on a rare skin genetic disease during a Post Doc in Germany. She joined the foundation to pursue her commitment to rare diseases and to put her skills at the service of the foundation through communication and partnerships.

Contact: pauline.nauroy[@]fondation-maladiesrares.com 

 

Mrs Juliette HUGUET

Communication officer in a work-study program

After a university career in languages and literature, Juliette will resume her professional studies in communication in September 2020. She will join the foundation in March 2022 to pursue her Master’s degree.

Contact: juliette.huguet[@]fondation-maladiesrares.com 

REGIONAL MANAGERS

Dr Laura BENKEMOUN

Regional Manager East and Research Advisor for Associations

With a PhD in Genetics, Laura has 10 years of experience in basic research in France and Canada. After a reorientation towards project management with an advanced certification from Centrale Lille, she joined the Foundation in 2014. After 7 years as Regional Manager for the East, Laura now holds the position of Research Advisor for associations.

Contact: laura.benkemoun[@]fondation-maladiesrares.com 

Mrs Gaëlle DOMBU-SMEETS

Regional Manager West

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.

Contact: gaelle.dombu-smeets[@]fondation-maladiesrares.com 

Mrs Céline BORDET

Regional Manager Greater Paris Area

Céline holds a Bachelor’s degree in Cell Biology, Genetics, Microbiology and Physiology and then pursued a Master’s degree in Genetic Counseling and Predictive Medicine.  She worked for 8 years as a genetic counselor in the clinical genetics department of the Pitié Salpêtrière Hospital (APHP).

Contact: celine.bordet[@]fondation-maladiesrares.com 

Dr Christine FETRO

Research and industrial partnerships and Regional Manager for Auvergne Rhône region

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.

Contact: christine.fetro[@]fondation-maladiesrares.com 

Find the good contact in regions: