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Ataxia and me

Type of organisation: Charities

The establishment of Ataxia and me, (charity 1184030) which launched on International Ataxia Awareness Day – 25th September 2016.

Based in West Wales, with a global following. With a strong focus on “patients helping patients” and a “Patient ENFUSED”, ethos, that will bring benefits of all affected by this rare Neurological condition.

Founded by a patient with Ataxia (a rare disease, affecting balance, speech and coordination), with the patient at the heart of the organisation.

The patient voice is PARAMOUNT within all aspects of this campaign / organisation and with this in mind Ataxia and me, is the place to get the “lived Experience” from the experts – the patients themselves.

Although, the main focus is Ataxia – to widen the remit, we also incorporate associated rare disease and movement disorders.

The wider scope of this platform will give a more Holistic view of the information available and benefit the health of this community of people affected by this “Life Limiting” Neurological, invisible condition.

We are very proud that this “over-arching”, Positive and Innovative platform has been congratulated at many levels of the health communities and pharmaceutical industries – both local and international.

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Location:Llanboidy
Carmarthenshire
Wales