Our organization – the Polish Neuromuscular Diseases Association has been active in Poland since 1989, offering support to the people suffering from genetically conditioned neuromuscular diseases, commonly known as muscle atrophy.
For instance, in our country the main problem for the families with such children is the lack a system of health care, especially a system of refunding necessary constant rehabilitation and appropriate orthopedic equipment. With progressing muscle atrophy the sick require constant help in all their activities. It all depends on the determination and financial situation of the parents. There is no real social support for the parents giving up their jobs. Given that those are very serious, chronic, incurable diseases, usually one of the parents decides to stay home to take care of the sick child on a daily basis. Although a sick child will receive pension, it is not enough to secure an independent life. So for their benefit, some kind of a movement of mothers should be created, which would fight for their right to a dignified life with their children.
This movement would introduce changes to the existing situation and assist in working out a support system for those families, which would give a sense of security to the disabled and their direct caregivers. The standards for the treatment of chronic diseases existing in the EU countries should be introduced as soon as possible.
Our Vice president mr Michał Rataj is an active member. He represents neuromuscular disorder association of Poland and has been elected twice also as an executive committee member of EAMDA and as a board member of EPF (European Patients Forum) Michal also represent as PCWP (Patients and Consumers Working Party) member in EMA. Michal is putting great attention to connectivity of all partners in order to fulfill one of the PTCHNM important goals: to represent, protect and enforce the rights and interests of persons with neuromuscular disorders. Looking from his interpersonal level, he is achieving this with improving the quality of life of people with neuromuscular disorders (NMD) in terms of equal treatment, technical aids, personal assistance, accessibility, independent living and full participation in the society.