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Relations with patients' associations

Long-term support

LFB provides long-term support to patients’ associations, chiefly those concerned with rare diseases, with a twin focus: contributing to a better understanding of these diseases and developing initiatives to improve patients’ quality of life.
LFB has been involved in this work for the last 13 years, alongside Alliance Maladies Rares (a collective of 206 patients’ associations). Similarly, in 2017 LFB supported the following patients’ associations: ADAAT (alpha-1 antitrypsin deficiency), AF3M (multiple myeloma), AFNP (peripheral neuropathy),IRIS and IPOPI (immunodeficiency), AFH and WFH (haemophilia).

All the LFB’s partnerships with French patients associations are registered on the link below: https://www.transparence.sante.gouv.fr

For LFB, improving the quality of life of patients with chronic diseases in their care environment is primordial, particularly in the case of young children. For instance, in the last 16 years LFB has partnered the Le Rire Médecin association, supporting weekly visits from « hospital clowns » in two departments of the Necker Hospital in Paris.

See also

Living with peripheral neuropathies, a video supported by LFB