Dystonias, NBIA and Paroxysmal Disorders

The Dystonias, NBIA & Paroxysmal Disorders Disease Knowledge Page provides reference information on care of dystonias, NBIA & paroxysmal disorders.

Information and knowledge that has been developed or endorsed by ERN-RND is found in the blue boxes.

ERN-RND centres for Dystonia, NBIA and Paroxysmal Disorders

Care Standards - Clinical Rating Scales


Pantothenate Kinase-Associated Neurodegeneration (PKAN):

Care Standards - Guidelines

Blepharospasm, cervical dystonia, adult spasticity and headache:

Practice Guideline update summary - Botulinum neurotoxin treatment

Primary Dystonia:

EFNS guideline

Pantothenate Kinase-Associated Neurodegeneration (PKAN):

Non-PKAN genetic defects:

Care Standards - Diagnosis


Diagnostic flowchart for Dystonia

Care Standards - Therapeutic Algorithms


Therapeutic algorithms for dystonia

Paroxysmal Disorders:

Therapeutic algorithm for paroxysmal disorders

Patient Journey

Cervical Distonia:

Patient Journey - Cervical Dystonia

A patient journey map for people living with Cervical Dystonia (original paper)

Patient Journey about dystonia here as a flyer

Clinical studies & trials

Patient information

Please note that this section includes useful information from a variety of sources provided by ERN-RND members but which hasn’t been endorsed by ERN-RND.

Further useful links, training resources, evidence and publications