About Us

APAHE – Portuguese Association of Hereditary Ataxias

APAHE is a non-profit organization with a national scope, founded in 2006 to fill a gap in Portuguese civil society.

An association that not only defends and protects the interests of people with hereditary ataxias—rare, incurable, and degenerative genetic disorders—but also raises awareness in society about their existence and their devastating physical and psychological effects, both for those affected and for their caregivers.

In 2007, APAHE was recognized as a Private Institution of Social Solidarity (IPSS).

Role of the association

• Support patients
• Raise awareness of these conditions and their physical and psychological effects on individuals and their families
• Support research on these conditions
• Update information through its website and blog
• Promote gatherings among members and anyone who wishes to join
• Fundraise to support these activities

Although APAHE has existed since 2006, it remains unknown to the majority of the public. Due to the limited mobility of most members, APAHE's outreach efforts are not conducted in a more immediate manner.

All the work at APAHE is carried out voluntarily by members and friends, often from their own homes, as they live far apart. As a result, most of the work is done online or via telephone.

We also have a dream and a goal: to build a home adapted to the needs of people with ataxias and reduced mobility. This home would serve not only as the association's headquarters but also as a refuge for individuals with ataxias—those who lack economic and/or housing conditions and those who, due to the progression of the disease, are highly dependent on caregivers.