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

My letter to McDonalds

by mikek published about 1 month 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...

A tribute to Glenn Irvine

by adrian_danek published 3 months ago 2 comments

Glenn Irvine who had passed away March 6, 2015, at his home in London, for 15 years had been a friend of many of us who are interested in the enigm...

Partners and Patient Groups

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