International rare disease day 2020- Expertise center Movement Disorders Groningen celebrates 5 year anniversary!

Yearly, the last day of February is reserved to raise awareness for rare diseases and its impact. The term ‘rare’ implies that these diseases are not very prevalent. Yet, about 1 million people in the Netherlands suffer from a rare disease, and worldwide there are about 6000-8000 rare diseases. 

The majority of these rare diseases are genetically determined.  People with a rare disorder mostly have already faced a longstanding journey before they received the right diagnoses, after which the search for the right treatment options starts. Knowledge into rare conditions often lacks, for example because there is no scientific research being performed or because there is no experience with a certain rare disease in the hospital. This may result in a lot of unanswered questions for the patient, and patients do not patients may not be able to receive all possible treatments.


To better address the needs of patients with rare diseases, national expertise centers were officially set up in 2015. In expertise centers,  knowledge and expertise in the field of rare diseases is bundled, protocols and guidelines are developed, research is being performed and adequate referral (national and international) for patients is organized.  The expertise center Movement Disorders Groningen was established  in 2015 and is active now already for 5 years! Within our expertise center, we aim to offer adequate and patient specific treatment to people with rare movement disorders. During the past 5 years, we have organized two inspiring patient days where patients and their families can meet each other and can learn more about movement disorders. In addition, a large scope of research projects is being carried out within Movement Disorders Groningen. By actively contributing to more knowledge into rare movement disorders and actively organizing patient specific care, patients will receive the right diagnoses faster and it enables a more focused search for appropriate treatment options.