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

Living with Neuroacanthocytosis in Madrid

by ytebarm published 8 months ago 3 comments

I was born in Madrid (Spain) 39 years ago. I've always been a very restless and nervous girl, but that never stopped me from living a normal life, ...

Approved by a neurosurgeon, DBS implant for one of my three siblings affected with NA.

by lemco800 published 11 months ago 6 comments

A few years ago, this same operation (consisting in the installation of electrodes deep in the brain that are activated by an electronic battery po...

Partners and Patient Groups

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