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
Educational webinars
- Paroxysmal dyskinesias by Giovanna Zorzi
- Genetic dystonia and treatment by Sylvia Boesch
- Treatable dystonias & dystonia in inborn errors of metabolism by Tom de Koning
- Clinical evaluation of dystonia by Kailash Bhatia
- Ultrasound diagnostics for cervical dystonia by Tobias Baümer
- RCT on intrathecal baclofen in dystonia by Laura Bonouvrié
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:
Patient Journey
Patient Journey - Cervical Dystonia
A patient journey map for people living with Cervical Dystonia (original paper)
Patient Journey about dystonia here as a flyer
Patient organisations
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.