Associação Atlântica de Apoio ao Doente Machado Joseph
The Atlantic Association for the Support of the Patient of Machado-Joseph (AAADMJ) is a private institution of social solidarity, headquartered in Ponta Delgada, whose mission is to represent and defend the general and collective interests of patients with Machado-Joseph disease and their families.
The association was formalized in 1996, allowing to break the isolation to which the patients of Machado-Joseph were subject. Between November 1999 and December 2001, AAADMJ was the manager of the project "Social Network of Support Machado-Joseph", promoted by the Institute of Social Action and financed by the Regional Directorate of Solidarity and Social Security and by the South Regional Commissariat of Fight against the Poor. In 2002, a new Cooperation Agreement was signed with the Social Action Institute, which included all the values created in the scope of the Project: Psychological support, Social support, Motricity and Hydrogeology classes, Activity Center (main link between users and society in general.): - Mobility classes - Hydrogeology classes - Recreational activities - Celebrations of important dates - Outdoor activities - Information and Clarification sessions on various topics - Raising of donations through the exhibition of works done by the users - Telephone Line Support from Monday to Friday, between 9:00 am and 5:00 p.m., a telephone line operates to clarify doubts or register requests for support from MJ carriers or their families.
In November 4, 2016 a briefing session was held by the University MJ Group, on the ESMI project http://www.neurodegenerationresearch.eu/?s=ESMI "European Initiative for Spinocerebellar Ataxia type 3 / Machado-Joseph disease". The ESMI is an international project that aims to contribute to the international constitution of a group of more than 800 people with the disease.
We know that our patients (more than 50%) suffer pain in any stage of the disease and we are sure that the number grows with the progression of incapacity and immobility.
To treat pain means a better quality of life.
We endorse the aims of SIP 2017, raising awareness of the relevance of the impact that pain has on our societies, health and economic systems, exchanging information and sharing best-practices in pain control, supporting strategies and activities for an improved pain care in our autonomic Region.
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