A MoU was recently signed by the European Reference Network for Rare Neurological Diseases (ERN-RND) and the International Parkinson and Movement Disorders Society, European Section (MDS-ES) to strengthen cooperation in Europe in the area of rare movement disorders. The objective of this Memorandum of Understanding is to improve the quality of care and research in the field of rare movement disorders by collaborating on three main activities:
- Training and teaching activities on rare movement disorders
- European guidelines and standard of care activities, and
- Information and dissemination of activities
Both organisations will be exchanging knowledge and resources beneficial to the work of their member clinicians, scientists and other healthcare professionals in finding appropriate diagnosis, treatment and care for rare movement disorder patients as well as promoting research on this topic.
ERN-RND and MDS-ES share a similar focus in terms of rare movement disorders they look at. The disease coverage of MDS-ES includes the following: Parkinson’s disease and Parkinsonism, Dystonia, Chorea and Huntington’s disease, Ataxia, Tremor and essential tremor, Myoclonus and startle, Tics and Tourette syndrome, Restless legs syndrome, Stiff person syndrome, Gait disorders and Spasticity. The ERN-RND currently focuses on Cerebellar Ataxia and Spastic paraplegia, Chorea and Huntington’s disease, Dystonias, Paroxysmal disorders and Neurodegeneration with Brain Iron Accumulation, Frontotemporal Dementia, Leukodystrophies and atypical Parkinsonian syndromes and is hoping to extend its disease coverage in the future.
This is a very exciting collaboration and we are looking forward to sharing knowledge and skills to support diagnosis, treatment and care advances in the field of rare movement disorders to improve the lives of patients, their families as well as caregivers.
You will find more information about the MDS-ES on their website.