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Genespoir, the French organization for albinism

Genespoir is the first French organisation for albinism.

History

Genespoir was created in Rennes in 1995 by Fabienne Jouan, a mother of three children, two of whom have oculocutaneous albinism.
As soon as it was founded, the organisation endeavoured to fund albinism research. Indeed, despite the significant media coverage given to rare diseases since 1997 and the creation of the Téléthon, nothing was really being done for albinism in France at the time. So, at Paris Necker Hospital in 1997, Fabienne Jouan met Dr Marc Abitbol (the director of the CERTO, an ophthalmic research centre) and the first research programme on albinism, supported by Genespoir, was launched in the CERTO laboratory in 1998.

Following its creation, Genespoir developed quickly in Brittany and then in the rest of France. In 1999, the organisation took on a national dimension with the creation of local chapters in different regions.

Today, Genespoir has more than 320 members: adults with albinism, the parents and relatives of children with albinism, friends and sympathizers. Several members live in the French-speaking parts of Belgium and Switzerland.

Objectives

Genespoir provides information to families with albinism, the general public and the medical world on albinism and its consequences: sun protection, optimal vision correction and protection, social issues, schooling and professional insertion. It provides support to people with albinism and their families, and informs them of their rights.

Genespoir encourages and contributes to funding albinism research, raising money exclusively for this among the general public, firms, foundations and public institutions.

Genespoir acts to improve the issues related to medical care and the reimbursing of medical expenses. The organisation represents and defends the interests of people with albinism. To alleviate the isolation that the condition can bring, the organisation holds meetings that enable its members to share experiences.

Organisation

Genespoir is a non-profit association.

It is managed by a board of directors elected by the annual general meeting.

The 2012 board of directors
  • Béatrice Jouanne, president, mother of three children with albinism
  • Bénédicte Louyer, vice-president, person with albinism
  • Vincent de Lardemelle, vice-president, in charge of the relations with private foundations and sponsors, father of a child with albinism
  • François Vocale, vice-president, father of a child with albinism
  • Madeleine Laigre, treasurer
  • Bernard Gliksohn, assistant treasurer, father of three children with albinism
  • Christine Monceau-Coudert, secretary, person with albinism
  • Eudoxie Temgoua, assistant secretary, person with albinism
  • Antoine Gliksohn, in charge of international contacts, person with albinism
  • Alain Boyer, father of a child with albinism
  • Gérard Grassini, person with albinism
  • Alexis Mendomo, person with albinism
  • Dominique Pinon, person with albinism
  • Jeanne Pinon, wife of a man with albinism
  • Korotimi Traore, person with albinism

Genespoir is represented by local chapters in 17 French regions and in the French-speaking part of Belgium.

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