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The French Foundation for Rare Diseases is, above all, composed of a team of professionals dedicated to supporting and funding research on the whole French territory. The originality of this model allows the Foundation to work in close proximity with research teams, to analyze the needs of the field, offer them personalized solutions and bring together the necessary expertise.

 

Since its creation in 2012, the results have been significant with nearly 300 research projects financed and supported for identify the cause and mechanisms of rare diseases and to promote the emergency of new drug candidates.

Pr Daniel Scherman Directeur

The Professor Daniel Scherman is an Exceptional Research Director at the CNRS. He is Doctor of State and a former student of the Polytechnical School.

Daniel Scherman was awarded the Great Prize of the « Emilia Valori » Sciences Academy for the application of chimical and biological sciences in November 2017. He is a member of the European Academy of Sciecnes EURASC. Manager of the Medicine and Life sciences unit.

Danier Scherman was also awarded of the following prizes : Experimental Uveitis Research Award – Deutsche Uveitis Arbeitsgemeinschaft ; Palmes Académiques ; Lauréat du Grand Prix de l’Académie Nationale de Médecine ; Médaille d’argent du CNRS ; Prix de la Recherche du groupe Rhône-Poulenc ; Prix de Neurobiologie de la Fondation pour la Recherche Médicale ; Prix de l’Institut de Biologie Physico-Chimique.

Danier Scherman perfoms or performed recently the following functions :

  • Director of the Centre de Recherche Pharmaceutique de Paris, à la Faculté de Pharmacie Université Paris Descartes
  • President of the section «Pharmacologie-ingénierie et technologies pour la santé-imagerie biomédicale » of the CNRS
  • Vice-Chairman of the programs« Horizon 2020 » ITN et FET-OPEN
  • President of the prize of Pharmacology Institut de Prague/SANOFI/Académie des Sciences Tchèque since 2006.
  • Founder and director of the Unité de Technologies Chimiques et Biologiques pour la Santé, CNRS- INSERM assoiate with the Université Paris Descartes and to the Ecole Chimie-ParisTech.
  • President of the Committee « Vecteurs non-viraux » of the ESGCT, Société Européenne de Thérapie Génique et Cellulaire. Member of the Conseil Scientifique de la Société Américaine de Thérapie Génique ASGCT (3 elected terms).
  • Manager for the conception and the realization of vectors for the clinal test of genetical therapy of phase I fot the personnalized treatment of the Age-related macular degeneration : project Target AMD of 7th PCRDT.
  • Former Scientific Director and then expert for the GENETHON (2006-2009).

Daniel Scherman scientif works are translated by 450 published articles, of which 350 were published in peer-reviewed journals, 63 books or participations to these books, 42 patent families, 115 invited conference with internation congress. This is translated in the Web of Sciences by an h-index impact factor : 60 and by 14500 quotations.

Furthermore, Daniel Scherman edits the « Handbook of Gene Therapy and Genetic  Pharmacology », Imperial College Press, 2014.

« The Foundation represent a remarkable model of collaboration between the sick people associations, the public organisations, and the people to move forward the knowledges about rare diseases, from their rapid diagnosis to the discovery of novel treatments, and to improve life quality of sick people. This is the meaning of my commitment and my struggle. »

Mme Nadège BEGLE Responsable philanthropie et partenariats / Philanthropy and Partnerships Manager

Nadège has been working at the Foundation since November 2016.
A lawyer specializing in patrimonial tax since 2002, Nadège has worked in international law firms and then in private banking.
Holder of a dual training in law / taxation (Master 2 Business Lawyer Paris XI – HEC, Master 1 Tax Law at the Sorbonne) and art market (IESA 2009), she has definitely joined the sector of philanthropy by working at the “Fondation de France” for two years.
Nadège joined the Rare Disease Foundation team to contribute to the development of relationships with major sponsors.

“To help and put at the service of families my technical skills to carry out their support for the cause of rare diseases

Mme Nouara BENAÏ Responsable administrative / Administrative Manager

Nouara has been working at the Foundation since March 2015.
Studies of letters and languages combined with an experience of living abroad (Egypt and Spain) have oriented Nouara towards the written press and radio (Hebdo Books, Bayard Press, RFI … Reporters of Hope and the Express with which it still collaborates) and internal and institutional communication (Ministry of the city within the firm Bartolone, different municipalities of Ile de France, International Center of Credit Mutuel). During this time, Nouara chose to make a ” pause ” well-being in 2004 to set up an organic restaurant bar in Paris with the idea of acting locally, to “create an oasis in all places”.

“Develop the indirect means of reaching the public for the fundraising, like the UTMB, by creating events likely to affect (in addition to athletes) fans of music, literature, theater, schools etc. “

 

Mme Anne-Sophie Blancher (Miossec) Responsable communication & relations publiques / Communication and public relations manager

Anne-Sophie has been working at the Foundation since September 2014.
Graduate of a DESS in communication management and the executive master in communication Sciences Po, Anne-Sophie has always worked in communication with a dual professional experience at the advertiser and communication agency. Anne-Sophie then set up her own structure as a communications consultant specializing in strategy consulting and brand positioning.
She joined the Foundation to share her expertise and know-how as a communications and public relations manager.

“Working for the FFRD has given meaning to my job and my actions. I am happy to be able to bring my skills to a solidarity cause that affects more than 3 million people. “

Pôle scientifique / SCIENTIFIC DIVISION
Dr Ingrid ZWAENEPOEL Responsable de la politique scientifique / Scientific Policy Manager

Ingrid has been working at the Foundation since 2012.

She holds a master’s degree in genetics and a doctoral thesis in human genetics on hereditary deafness at the Institut Pasteur.
After 3 years and a half in postdoctoral research at the Faculty of Medicine of Geneva in Switzerland, then at the Institut Curie in Paris (2 and a half years), Ingrid organized and administered the research of GiS – Institute of rare diseases to Paris, for 2 years.
Today, Ingrid coordinates and implements the scientific policy (calls for projects, scientific committees, partnerships with technological platforms, scientific monitoring and technology watch) of the Foundation.

“A commitment to sharing deep values and using my expertise to support patient-centered research. “

Mme Diana DÉSIR-PARSEILLE Chargée de l’administration de la recherche / OFFICIAL IN CHARGE OF RESEARCH ADMINISTRATION

Diana has been working at the Foundation since May 2012.
Diana holds a master 2 research in molecular and cellular biology, specialty biochemistry of proteins.
Before joining the Foundation, she participated for 4 years as a research engineer in the European program EUNEFRON for the creation of databases of hereditary nephropathies.
Diana joined the Foundation from its inception as an administrative and financial officer and then became responsible for the administration of research.

“I committed to the Foundation after a first experience with doctors and patients, to be useful to a cause too often neglected. « 

PÔLE OPÉRATIONS / OPERATIONS DIVISION
Point1 Dr Anne-Sophie YRIBARREN Responsable régionale Nord-Ouest / North West Regional MAnager

Anne-Sophie has been working at the Foundation since April 2017.
She holds a master’s degree in biochemistry in immunology and a doctoral thesis from the Compiègne University of Technology. After 4 years of academic research on the characterization of catalytic antibodies and the implementation of innovative screening techniques, Anne-Sophie specialized in biomedical communication. She worked for 13 years with clinicians, patients, industrialists and health agencies on many health issues including some in the field of rare diseases.

Anne-Sophie joined the Foundation in April 2017 as Regional Head North West.
“Rare diseases are both a research challenge and a health issue. My motivation in joining the Rare Disease Foundation is to listen and create synergies to bring the most innovative solutions to sick people and their loved ones “

Point2 Mme Gaëlle Dombu Smeets Responsable régionale Ouest / West Regional Manager

Engineer in life sciences (ISA Lille), and holder of a master’s degree in international development (IRC Montpellier SupAgro), Gaëlle has worked for nearly 10 years in project management and NGO fundraising functions in France and in sub-Saharan Africa. Her associative career has been dominated by the realization of development programs aimed at improving living conditions (access to health, nutrition, education, and training) for people in vulnerable situations. In order to use her skills in developing public and private partnerships, and specialize in the field of rare diseases, Gaëlle then joined the AFM-Téléthon.
Gaëlle joined the Foundation in December 2017 as West Regional Manager.

“Passionate about the human, the research and the health sector, I joined the Foundation to contribute to the many challenges in the field of rare diseases, and thus allow people affected by the disease to move forward in the best conditions possible in their life projects. “

point3 Dr Emilie BONNAUD Responsable régionale Sud-Ouest / South-West Regional Manager

Holder of a thesis in Neurovirology (University Toulouse III), Emilie has 5 years of experience in basic research. Before joining the Foundation, she participated in the scientific and technical coordination of the activities of a European program of viral biobank – EVAg – at the Institut Pasteur. Emilie has now joined the Foundation as Regional Head Southwest.

“Joining the Foundation is giving meaning to my job, sharing strong human values, and leveraging my expertise for research focused on the cause of rare diseases. “

Point4 Mme Célia MERCIER Responsable régionale Ile de France / Manager of the Ile-France region

Célia has been working at the Foundation since June 2015.
Biochemist by training (UPMC Paris 6 and holder of a pre-doctorate at Compiègne University of Technology), Célia obtained a specialized Master’s degree at Neoma Business School-Agro Paris Tech. Célia specializes in business development in pharmaceutical services for CMOs and CROs (galenic and analytical development, BPF manufacturing …). She is now regional manager Ile-de-France.
“I joined the Foundation to act as close as possible to the actors of research and care, and thus contribute to the improvement of the life projects of patients with rare diseases. “

point5 Dr Laura BENKEMOUN Responsable régionale Est / East Regional Manager

Laura has been with the Foundation since February 2014. With PhD in Genetics, Laura has 10 years of experience in basic research. After a postdoctoral position in Montreal and 9 scientific publications, she re-oriented herself towards project management by obtaining an advanced certification diploma from Centrale Lille engineering school.

 

“It’s a report from AFM-Téléthon that convinced me, at the age of 15, to ” achieve a PhD thesis of genetics “. Rare diseases have always been my red thread. Wishing to exercise in the accompaniment and valorization of the research, the Foundation is the logical continuation to my career of researcher.”

point6 Dr Christine FETRO Responsable régionale Rhône Alpes Auvergne / Rhone Alpes Auvergne Regional Manager

Christine has been working at the Foundation since March 2015. Christine is a pharmacist by training (PharmD thesis of clinical pharmacy – Montreal) and holds a Master’s degree in international regulatory affairs .After a 20-year hospital-industrial course Internationally, Christine brings her experience as a medical affairs manager in the industry and her medico-regulatory expertise at the service of the Foundation.

 

“We do not come by chance to the Foundation … “

point7 Mme Roseline FAVRESSE Responsable régionale Sud-Méditerranée / Regional Manager South-Mediterranean

Roseline has been working at the Rare Disease Foundation since September 2012.
Graduate of a Master in geopolitics from the Ecole Normale Supérieure (Ulm) and the University Paris 1 Panthéon-Sorbonne (2003), Roseline Favresse has an academic background in humanities. She first worked as a researcher in geopolitics, within a think tank (IPEMED), NGOs (Doctors of the World) and international organizations (United Nations, Council of Europe) on topics related to international conflicts, irregular migration and economic development in Africa. She then specialized in coordinating research projects in sub-Saharan Africa in close collaboration with the European Commission. Since 2009, she has worked in the field of rare diseases, firstly in a consulting firm in innovation financing, with European leaders in neuromuscular diseases and since 2012 for the Rare Diseases Foundation as a regional manager, in charge of international affairs.

“Joining the FFRD has been a logical continuation of my previous experiences, with rare diseases naturally occurring on an international scale. Within the Foundation, I can bring to the benefit of researchers, clinicians and the associative world the experience gained in international collaborative projects. “