Duchenne Ukraine

Basic information:

Duchenne Ukraine was founded in 2019. The organization aims to protect the interests of patients with Duchenne muscular dystrophy by promoting the development of medicine and life support for such patients in Ukraine.

Over the past four years, dozens of projects have been implemented by organizing and conducting scientific and practical conferences, workshops, and trainings for scientists, doctors, families, and representatives of state and local authorities. Several information sources have been created to provide modern listeners with updated information on international standards for the treatment and social protection of patients with neuromuscular diseases, including Duchenne. Charitable assistance to families and joint meetings of children, parents, doctors, and government officials are provided.

Local programs are being developed to provide life support to eligible patients.

Regions of active representation or activity:

All regions of Ukraine

Main projects of the company:

1 Publication of the first Ukrainian magazine on Duchenne muscular dystrophy, including legal aspects, transcripts of international conferences, international treatment standards, adaptability of schools and training, as well as family stories and social projects. The magazines are sent to regional hospitals and neurologists in all regions of Ukraine.

2. The 1500 Years of Survival project, which provides practical training for doctors, families, and patients on respiratory support for patients, providing patients with portable breathing devices at home to avoid complications from respiratory diseases and premature death. As a humanitarian aid, 57 used breathing devices from Belgium and France were brought to Ukraine.  

3. Conducting a conference on International Duchenne Awareness Day at Cobham Free School, UK, with the participation of the Deputy Prime Minister of the United Kingdom Dominic Raab and the Chairman of the Verkhovna Rada Committee on National Health, Medical Care and Medical Insurance, Mykhailo Radutskyi. The conference was attended by about 700 people at the school and 535 people registered online from the Ukrainian side.

The main donors of the society:

PTC Therapeutics, Sarepta Therapeutics, Roche

Which collaboration would be the most interesting/priority?

1. International cooperation in the implementation of the project "Do You Have Duchenne?", which involves DNA analysis of potential patients with Duchenne, their mothers and sisters. Implementation of clinical trials for patients, saving mothers from sudden death after 40 years and preventing the birth of a child with a disrupted dystrophin gene.

2. Preparation of the project: "Economic efficiency of neuromuscular centers in Ukraine" with research and conclusions.

3. International practical training course for doctors from Ukraine in the UK and Italy in specialized neuromuscular centers.