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Description
PARENT PROJECT, z.s. is a Czech patient organization founded in 2001 by parents of children with Duchenne or Becker muscular dystrophy. The organization focuses on advocacy, individualized care, education, raising awareness, international cooperation, cooperation with doctors and neuromuscular centers in the Czech Republic and also organizing social gatherings for its members.
At the moment, the team consists of active parents of children with neuromuscular disease and of several experts (doctor, psychologist, physiotherapist, occupational therapist, social worker), everyone on the team is irreplaceable and due to the limited personal capacity the organization can''t reach the maximum potential.
The goal of this project is to PROFESSIONALIZE the organization and to secure long-term FINANCIAL SUSTAINABILITY.
The key activities are:
1) strengthening staff capacity
2) development of provided services
3) patient advocacy and networking
4) publicity of the project
The primary target group are patients with neuromuscular diseases and their families, the second target group is the public and also other patient organizations working who we cooperate with.
Our partner for this project is Frambu Foundation, Norwegian organization running one of the best centers for patients with rare disorders in Europe. Frambu Foundation will be our free of charge mentor and advisor through the process of restructuring.