Visegrad countries rare neurological disorders network initiative
A first conference on Visegrad Countries Contribution to European Reference Network on Rare Neurological Diseases was held in Warsaw, Poland on 23rd April 2016. Representatives of each particular Visegrad country were present as well as guests who are involved into European rare neurological disorders networking initiatives. Invited participants from Visegrad countries in alphabetic order were:
Dr. Zoltan Grosz M.D, Ph.D. specialist in neurology, from the Institute of Genomic Medicine and Rare Disorders at the Semmelweis University in Budapest, Hungary,
Dr. hab. Zsigmond Tamas Kincses M.D, Ph.D. specialist in neurology, from Department of Neurology, Head of Neuroimaging Research Group of the Szeged University in Szeged, Hungary,
Professor Maria Judit Molnar M.D., Ph.D., DSc. specialist in neurology, psychiatry and clinical genetics, director of Institute of Genomic Medicine and Rare Disorders, elected President of the Hungarian Human Genetic Society, secretary of the Hungarian Personalized Medicine Association, from Semmelweis University in Budapest, Hungary,
Dr. Matej Skorvanek M.D, Ph.D. specialist in neurology, from the Department of Neurology at the Safarik University in Kosice and University hospital of L. Pasteur, Slovakia,
Dr. Olga Ulmanova M.D, Ph.D. specialist in neurology, Department of Neurology and Centre of Clinical Neuroscience at the Charles University in Prague, Czech Republic,
Prof. Rafał Płoski Ph.D. Head of Department of Genetics of Medical University in Warsaw, Poland.
Dr. Grzegorz Witkowski M.D, Ph.D. specialist in neurology, First Department of Neurology in the Institute of psychiatry and Neurology, Warsaw, Poland.
Invited speakers from other countries were:
Prof. Adrian Danek M.D, specialist in neurology, associate professor at Department of Neurology at the University Hospital in Munich, Germany, who is a leader within the Neuroacanthocytosis Network and our networking expert in rare neurological disorders ,
Professor G. Bernhard Landwehrmeyer M.D, Ph.D. specialist in neurology, Principal Investigator of Global Enroll-HD Study from Department of Neurology at the Ulm University, Ulm, Germany,
Dr. Gabriel Miltenberger-Miltenyi M.D., Ph.D., specialist in genetics, Institute of Molecular Medicine, the University of Lisbon, Lisbon, Portugal,
Professor Jean-Marc Burgunder M.D, Ph.D. specialist in neurology, Chair of European Huntington’s Disease Network Executive Committee based in Bern Switzerland.
Organizer of the meeting was Danuta Lis, President of the Polish Huntington’s Disease Association and host of the conference was Dr. Daniel Zielonka M.D, Ph.D. specialist in neurology, supporting member of the Polish Huntington’s Disease Association, affiliated at Department of Epidemiology of Rare Neurological Disorder and Neuroepidemiology at Poznan University of Medical Sciences, Poznan, Poland.
Several aspects of neurological rare disorders networking were discussed at the meeting. Each meeting participant introduced himself/herself at the beginning and described his/her current work and achievements in rare neurological disorders research and care/treatment experience. This formed the basis to open a discussion concerning vision of our Study Sites potential contribution to a rare neurological disorders network. As several different visions were presented, discussion was needed to establish draft of the possible network construct. Speakers invited from outside of Visegrad countries presented expectations of European community regard such network and potential conflict of interests with other ongoing initiatives.
The discussion allowed to establish a preliminary roadmap for the Visegrad countries rare neurological disorders network and take the following decisions:
Our initiative should be announced to nerve-centers in all Visegrad countries and our idea should be widespread across European countries.