AFG (Association Francophone des Glycogènoses), France
Rare diseases changed the course of my life. My eldest daughter was diagnosed with a Type 3 Glycogen Storage Disease in 1988, and has developed other immune diseases. I’ve been involved in patient advocacy on rare diseases for over 25 years. My main objective since then is to help cure and share information for people suffering from rare diseases especially Glycogen storage diseases, to serve as patient representative and for the common good to the community. I founded AFG in 1992, and have run it 10 years as President.
I never stopped my work with them and I’m still on the board as Vice President in charge of Institutional, Scientific and International Relations. Over the years I’ve developed good knowledge on rare diseases. I collaborate and participate in different research projects. Beside that, I involve myself in advocating for patients, for protecting their rights, give access to a better quality of care to specific public with rare metabolic and complex diseases, and to empower patients:
- Promote better visibility to patients and practitioners, in order to make access to care easier
- Promote early patient diagnosis in order to give better treatment
- Promote patients’ registries & databases for research and care
- Promote active in Health and Social policies and strengthen European links
Involvement in rare diseases community
- EURORDIS ePag since 2016 (European Patient Advocacy Groups)
- Board of director of the Alliance maladies rares (French National Alliance for Rare Diseases)
- Board of director of the MRIS Rare Diseases info service France
A career rich in professional and personal experience in health organisations. I did work for “the patients’ rights” and my career led me to engage myself. I do work as Project Manager at APHP Paris for DéfiScience [National French Networks for rare developmental brain disorders & intellectual disabilities]. In charge of transversals projects [Databases, rare disease registers BNDMR and Orphanet; National guidelines and Care Protocols; Association Relations Officer, networks and territories, ERN…]
- “Expert in experience” as a Mummy of a patient concerned by a genetic metabolic disorder (GSD)
- Executive Master degree – Strategic Management of Health and social services– IAE Bordeaux
- DIU – Inter-University Diplomas in Health – Intellectual and Mental Disability – UPMC Paris
- Bachelor’s degree – Documentary Resources Management and Databases – INTD Paris
- Eurordis program Summer school: empower patient representatives in the areas of clinical trials and EU regulatory affairs
My wish is to develop with MetabERN, practical projects that are acceptable and all feasible, no need and time to dream. Never forget that we take care of sick people in great precariousness, for whom we must do the best we can. I am passionate about innovation in general, human and social sciences.
Thanks for the trust you give me to build, with you all, a strong MetabERN for every person concerned.