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WE ARE NOT ALONE: Support For Families With Spinal Muscular Atrophy

Counteracting exclusion Completed
FSMA Iceland, Iceland
2014-08-04 - 2014-12-31
70 000,00 PLN
63 000,00 PLN
Project description
In Poland, the offer from public assistance bodies for persons affected by spinal muscular atrophy (SMA) is far from being sufficient. The condition is not even listed in the Register of Chronic Diseases of the Ministry of Health, which has negative consequences for availability of rehabilitation and integration assistance financed from public funds. Experiences of Polish patients and their families show that the knowledge on specificity of the spinal muscular atrophy is insufficient even among doctors.

The aim of the project was to ensure wide-ranging educational and informational support and create permanent support mechanisms for persons affected by spinal muscular atrophy in order to prevent their loneliness and alienation.

The families were trained in methods of care for persons with SMA, were given access to reliable information on the disease, its effects and methods to get along in the present legal conditions. They had opportunity to integrate and exchange experiences.

A two-day training and integration reunion was organised with participation of lecturers from Poland and abroad (85 families - 260 persons - took part in the event). In cooperation with doctors, the first Polish guidebook for families coping with SMA was prepared and published (300 copies). An Internet information service helping to steer among the multitude of legal regulations was created. Launching discussion groups dedicated to problems of living with SMA (2 groups, 400 families from Poland and abroad) led to establishing a permanent mutual support mechanism.

The project activities directly benefited persons with the spinal muscular atrophy and their families (85 families). Publicising of the materials prepared will enable the Grantee to reach more families, in particular those of persons freshly diagnosed with the disease.

Cooperation with the partner, FSMA Iceland, let Grantee enhance their competencies as for the methods of communication with patients and their families, cooperation with the authorities, technical and legal solutions. During the training organised in Poland for the Foundation team, the partner presented their experiences and developed solutions. Cooperation was continued through regular phone conversations.
We use the grant for capacity building