Determined to fight so that this disease is no longer a fatality, Élisabeth Martin, affected by the disease and Hubert de Landevoisin, family concerned, created the Association in 1998. It now has more than 120 members (patients, family, friends).
2 Major objectives
1
The implementation of research on the disease in connection with its Medical and Scientific Council (CMS).
2
The collection and centralization of medical and medico-social knowledge on Ollier-Maffucci pathology.
Other objectives…
Welcoming new patients and their families
Listening to their difficulties and demands in the face of illness, including telephone support
The identification of affected patients, through the hospital sector, through specialist physicians
Information to the general public and the medical community, particularly through a leaflet
Referencing practitioners who are familiar with the pathology and likely to take care of patients near their home
The study of the impacts of the disease on daily life to make administrative and medical bodies recognize the realities and difficulties and thus benefit from a better adapted management
The purpose of the Association is to implement and promote the means necessary to foster:
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- Information for people with Ollier’s disease and Maffucci syndrome;
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- The educational, professional, economic, social and emotional integration of people with disabilities as well as support for their families and loved ones;
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- Exchanges of all kinds with the medical profession, the media and other associations;
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- The development of basic and applied research on these conditions.
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Exchanges and sharing between families and patients
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Exchanges and links with other Ollier-Maffucci associations in Europe, the United States,…
- The creation of official documents (PNDS, emergency map, follow-up calendar in link, …) with specialists and facilitate their dissemination
And grow the network of members and volunteers!