Organisation

UPPMD has as its purpose:

Worldwide collaboration between Duchenne Parent organisations in order to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD and BMD);

The organisation will in particular devote itself to the realization of this task by way of the following goals:

  1. Promote research activities;
  2. Provide information to parents and clinicians on ongoing research, drug development, standards of care, patient advocacy; UPPMD reaches out to countries where limited information about Duchenne Muscular Dystrophy is available, and UPPMD facilitates the exchange of information about fundraising and lobbying activities among member organisations.

UPPMD income is the result of fundraising activities and membership fees. We are not sponsored by the industry.
Please find the annual income statements here:
– Annual income statement 2014
– Annual income statement 2015

UPPMD is a not-for-profit organisation under Dutch law. Please find the articles of association here.