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

Rare Disease Day 2015

by RareConnect team published about 1 month ago One comment

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the gen...

My story with Neuroacanthocytosis

by Peppe published 8 months ago 8 comments

Our ordeal started at age 35. He couldn't express himself well..he was shaking...biting his tongue..feeling agitated. He couldn't swallow. All thes...

Partners and Patient Groups

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