Our objectives
Advocacy for Neuroacanthocytosis Patients (NA Advocacy) exists to:
- provide support to patients, their family and carers affected by neuroacanthocytosis (NA) syndromes
- shorten the interval to correct diagnosis by raising awareness and making diagnostic tools available
- fund research for better understanding and treatment of NA syndromes.
NA syndromes are rare neurodegenerative conditions covering VPS13A disease (also known as chorea-acanthocytosis) and XK disease (also known as McLeod syndrome).
Our activities
Our key activities currently revolve around:
- support to potential, newly diagnosed or existing patients, their families and carers (communications by email, virtually or even in person where possible)
- advocacy efforts such as engaging with clinicians, raising awareness through Rare Disease Day and media channels collaborations, and participating in wider rare disease networks
- fundraising campaigns
- building collaborative relationships and partnerships (e.g. Multidisciplinary teams at the National Hospital for Neurology).
Causes
Disability
Health and well being / research and care
