Project

Region	National coverage
Title of the Programme	Health
Title of the Project	Let-s help them live and die at home
Number of the Project	ZD-MGS3-024
Project Promoter	Society for Mucopolysaccharidosis
Project Partner from Donor State	N/A
Czech Partner	N/A
Status	Estimated project duration: 1/2022 – 12/2023
More Information	Target group:     People with disabilities General public Web pages: https://www.mukopoly.cz
Total Eligible Costs	42 341 EUR
Grant	42 341 EUR (100 %)

Summary:

The aim of the project is an improvement of professionalism, quality and extent of activities of the patient organization Society for Mucopolysaccharidosis. It was founded already in 1994 and is among organisations with the longest history in the area of rare diseases taking into account working in favour of patients with Mucopolysaccharidosis (MPS) and similar metabolic disorders.

MPS remains an incurable and in most cases lethal disorder. The organisation takes into account its specifics and complexity. The project ensures improvement of the level of managing, personal and communication competencies of the organisation. The realisation of the project will lead to better effectiveness of activities that were performed before (mostly on a voluntary basis).
The activities of the project are focused on the improvement and development of these areas: internal management of the organisation, education of and communication with the target group, advocacy both in communities and at a central level, and professional support of the target group (children and their parents). The ultimate aim of the project is to contribute to the improvement of the care of the patients of the target group.