AAADMJ – Associação Atlântica de Apoio aos Doentes de Machado-Joseph

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“Clinical Research Networks”

CATEGORY: News

On April 18, 2024, AAADMJ attended the Clinical Research Networks meeting promoted under the European Erdera project, as an association that represents and defends the interests of Machado-Joseph patients, their families and caregivers.

This meeting allowed various entities related to MJD to discuss the possibility of creating a National Reference Center for Machado-Joseph Disease, which will be the subject of an application for funding. This is an initiative that will allow more patients to be covered, as well as facilitating procedures and promoting the sharing of knowledge and technical and technological resources, and could become a paradigm for other Ataxias.

It should be noted that from the beginning of its creation, the AAADMJ has acted as a facilitator between patients and clinicians related to Machado-Joseph Disease, in which it has always been aware of the importance of research and, in 2006, it became a collaborative member of the ESMI Azores project, which is currently called the European Network Initiative for Machado-Joseph Disease (ESMI) and which brings together professionals from the University of the Azores, Hospital do Divino Espírito Santo and Hospital do Santo Espírito. Through this collaboration, the AAADMJ seeks to play a proactive role in supporting the knowledge that is important to patients and families, particularly in relation to therapeutic opportunities.

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