Welcome - Neuroacanthocytosis Community

What is Neuroacanthocytosis ?

Neuroacanthocytosis is a group of four severe movement disorders: Chorea-acanthocytosis or ChAc, McLeod Syndrome or MLS, Huntington’s disease-like 2 or HD-like2 and pantothenate kinase associated neurodegeneration or PKAN. All have similarities with Huntington’s and Parkinson’s diseases. There are no cures yet, but that does not mean that we are helpless. Here are stories of what patients and their families do to help one another and encourage doctors to hurry in their search for a therapy.

Source: Participating patient organizations visible below

Neuroacanthocytosis Resources

More members stories

Latest Member Stories

choreacanthocytosis

by nicola_riddell published 8 days ago No comment

I was diagnosed with choreacanthocytosis in march 2015. It took nearly 2 years for it to be diagnosed as I was tested twice and my blood went to Ge...

My letter to McDonalds

by mikek published 2 months ago No comment

At age 36 I was a “normal”, healthy and happy guy. I had a rewarding career as a teacher, I was happily married and looking forward to a bright...

Partners and Patient Groups

RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community.