On Saturday the 18th of May the UMCG held its second edition of the Patients Day for rare movement disorders. Almost 50 volunteers of various backgrounds worked hard to make this day a success!
Approximately 250 patients and their loved ones were present to learn more about movement dissorders, not only through contact with specialists, but also by sharing experiences and stories with each other. Special attention was paid to scientific research, but also problems patients experience every day. Workshops covered employment, the UWV, societal and pedagogical hurdles; as well as sources of support and sports.
If you would like to support or Expertise Center so we can improve the care we provide our patients and organize more days like this in the future, we kindly direct you to look at Stichting Steunfonds UMCG for more information.
The summary of our last Patient's Day.
On saturday the 20th of may, a Patient's Day was organised by the Expertise Center Movement Disorders Groningen, for patients with rare movement disorders from the UMCG.
Although the word rare implies only a small number of patients suffer from it, all rare movement disorders together provided a group of 220 patients and family members. Patients from all over the Netherlands made the journey to the UMCG to hear more about the Expertise Center, patient organisations and the role of deep brain stimulation (DBS) in the treatment of movement disorders. In the afternoon, groups were formed per condition (ataxia, chorea, (doparesponsive) dystonia, functional movement disorders, North Sea Disorder, hyperekplexia, myoclonus dystonia, myoclonus, neurodegeneration with brain iron accumulation, paroxysmal kinesiogenic dyskinesias and disorders caused by inborn errors of metabolism). In these groups, new insights in pathophysiology and treatment from medical research and clinical experience were presented, patients could ask questions about their disorder and there was room for patients to meet others with comparable conditions. All in all we look back to a successfull day!
More information on the Expertise Center Movement Disorders Groningen can be found on this page: Centre of expertise