Niemann Pick France

The Niemann Pick French Association pursues the objectives of social solidarity, and participation in the protection of the rights of people with Niemann Pick disease, gangliosidosis and related diseases. This assistance is naturally extended to families and all those who suffer from similar diseases. In particular, for the achievement of the objectives and with the intention to act in favor of the whole community, the association proposes to:

  • Disseminate information to families when people are affected by Niemann Pick disease,
    Gangliosidosis or related diseases;
  • To make information available through brochures, newspapers, television and in any case with the
    means deemed the most appropriate, to raise awareness of these diseases and the problems that derive from it.
  • Educate doctors, so that they arrive the as quickly as possible to suspicion and possible diagnosis of the aforementioned pathologies;
  • To confront the reference centers to identify structures, institutions and all other organizations able to actively help find solutions to improve the quality of life of patients and members of their family;
  • Promote meetings with relatives,
    family members of patients, physicians, paramedical personnel, social workers, school
  • Establish relationships with other associations, organizations, and volunteers who aim to participate
    and help in the social and health field;
  • To raise funds for institutional goals, support clinical and basic research; the awarding of scholarships, prizes, awards for researchers; finance the purchase of special equipment and medicines; provide assistance, including economic assistance, to the sick and their families, where appropriate, according to indisputable criteria established by the Governing Board.

Condition Awareness & Advocacy

Here is a list of conditions this partner raises awareness and advocacy for: 

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