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

Confirm your diagnosis: “My gift”

by RareConnect team published about 1 month ago
One comment

When I proposed to Isabel, she smiled her beautiful smile and said, "Of course I'll marry you!". During our dinner, I ignored it in my happiness ...

McLeod syndrome

by yddib published 2 months ago
4 comments

I do not understand this illness. There is supposed to be only 150 people in the world that have it and that scares me because everyone knows the f...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.