Professionalization and restructuring of PARENT PROJECT

About this project

<p>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.&nbsp;</p> <p>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.&nbsp;</p> <p>The goal of this project is to PROFESSIONALIZE the organization and to secure long-term FINANCIAL SUSTAINABILITY.&nbsp;</p> <p>The key activities are:</p> <p>1) strengthening staff capacity<br> 2) development of provided services<br> 3) patient advocacy and networking<br> 4) publicity of the project</p> <p>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.&nbsp;</p> <p>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.<br> &nbsp;</p>

Bilateral cooperation results

The cooperation with our Norwegian partner was a great inspiration for us. In many ways we are dealing with similar problems and patient situations in both countries. However, the FRAMBU Centre has been taking care of patients with rare diseases for much longer, so sharing with such an experienced partner has clearly enriched us and allowed us to look at individual topics of patient care from a different perspective, broadened our view on the solution of individual topics and shown us new ways. One of the highlights for us was the sharing of knowledge about care coordination in Norway and palliative care for adults with Duchenne/Becker muscular dystrophy, which the FRAMBU Centre is also starting. We really appreciate the partner's willingness to discuss different aspects of care with us and the time they put into preparing the calls.

Project partners

• Frambu Resource Center for Rare Disorders Donor project partner· Norway