Rare Disease Day 2023
International Rare Disease Day takes place on the last day of February every year. A rare disease is rare, affecting less than 1 in 2,000 people. But since there are many rare diseases (6000-8000), the group of people with a rare disease is large. An estimated 1 million people in the Netherlands have a rare disease. For people with a rare disease, it often takes years to get their diagnosis; we cannot yet treat the majority of these diseases properly.
Nationally recognized centres of expertise are being set up to better meet the needs of people with a rare disorder. Centres of expertise bundle knowledge and expertise in the field of rare disorders, develop protocols and guidelines, coordinate research and ensure adequate referral of patients within and outside the Netherlands. At the expertise centre for Movement Disorders Groningen, we want to be able to offer people with a rare movement disorder adequate and patient-specific care. To this end, we organize patient days and conduct scientific research, for example. By actively contributing to more knowledge about rare movement disorders and organizing specific care around the patient, patients receive the correct diagnosis more quickly and suitable treatment options can be sought more specifically.