Choose an area:

Let-s help them live and die at home

Department 58 – International Relations
Department 58 – International Relations

Published

Project
Region National coverage
Title of the ProgrammeHealth
Title of the ProjectLet-s help them live and die at home
Number of the ProjectZD-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.