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ISSN 2992-779X (Electronic)
ISSN 2007-6452 (Print)

2013, Number 3

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Investigación en Discapacidad 2013; 2 (3)

Impact of parent organizations on research in Duchenne muscular dystrophy: Maternal activism as a force for change

Fokkema J, López-Hernández S, López-Hernández LB

Language: Spanish
References: 16
Page: 135-140
PDF size: 162.68 Kb.


ABSTRACT

Duchenne muscular dystrophy is a devastating neuropediatric disease that causes disability and early death. Its genetic origin as an X-linked recessive trait determines that women are asymptomatic carriers of the disease, but at risk of transmitting it to their male offspring. Non-profit organizations conducted primarily by mothers of children with Duchenne muscular dystrophy have obtained a major impact on the advancement of knowledge of this disease. This paper emphasizes the role of mothers of patients with Duchenne muscular dystrophy that lead these non-profit organizations and share the mission of improving diagnosis, treatment and quality of life of all individuals affected by Duchenne muscular dystrophy, through research, fund-raising, education and advocacy health in various fields.


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