• Startdatum:
  • 26 oktober 2018
  • Cursusduur:
  • 1 dag
  • Werkzaam als:
  • Medisch specialist


  • NVN:
  • 5
  • VKGN:
  • 6
  • ABC 1:
  • 6

This course provides an overview of future trends in healthcare and therapy of neurodegenerative disorders based on experience in Huntington’s disease gathered over the last 40 years.. Speakers will address the developments that have been made in the care of patients with chronic disease in their final stages and the care of individual patients during the course of their disease. Also the patient within the family system as a network of care will be discussed.

In 1978 the diagnosis of Huntington’s disease was made on the clinical picture of chorea and a positive family history, hopefully confirmed earlier by examination of the morphology of the brain of a clinical certain case. A lot of progress has been made after the finding of the linkage in 1983 and the gene in 1993. From then on, the whole new field of premanifest testing in neurological disorders started. It gave a huge input into basic research with only one aim: to find a useful therapy. The steps made in the lab must be transferred to the clinic. The question is how to do that properly, with the restricted amount of money and clinical available patients. The field is eager to participate so the clinical trials must be structured very rigid so that the maximum result comes out each trial. The rarity of the disease hinders the progress, the other side of the coin is that it made a strong point by organizing a worldwide collaboration possible, which otherwise never could have been reached.

This day will also illustrate how other chronic diseases can learn from these findings and vice versa.

This course is endorsed by the Dutch Society for Movement Disorders.


  • Prof.dr W.P. Achterberg, PHEG, LUMC
  • Dr N. A. Aziz, LUMC, department of Neurology/DZE, Bonn (D)
  • Prof.dr B.R. Bloem, Parkinson Center Nijmegen, Radboud University
  • Dr S.J. Booij, CWZ Hospital Nijmegen
  • D. Craufurd, department of Genetics, University of Manchester (UK)
  • Prof. A. Durr, Pitié-Salpetrière, Paris (F)
  • Prof.dr J.J. van Hilten, department of Neurology, LUMC
  • Dr K. Kieburtz, University Rochester Medical Centre, Rochester (USA)
  • Prof.dr G. Bernhard Landwehrmeyer, FRCP University Hospital Department of Neurology, Ulm (D)
  • Dr R. Reilmann, George-Huntington Institute, Münster (D)
  • Dr W.M.C. van Roon-Mom, department of Clinical Genetics. LUMC
  • Prof.dr A. Tibben, department of Clinical Genetics, LUMC
  • Prof. S. Tabrizi, Huntington's Disease Center at University College London (UK)
  • Prof.dr J.J.G.M. Verschuuren, department of Neurology, LUMC
09:30 Registration and coffee
  Chair: Willeke van Roon
09:55 Welcome and introduction
10:00 Palliative care or euthanasia
  Suzanne Booij
10:20 Top care development in nursing homes
  Wilco Achterberg
10:40 Can every disease have its own network of care?
  Bas Bloem
11:05 Tea/coffee break
  Chair: Aad Tibben
11:20 Development of global clinical platforms: HD as a model
  Bernard Landwehrmeyer
11.45 Animal models for neurodegeneration
  Ralf Reilmann
12.10 How to link the lab to the clinics
  Ahmad Aziz
12.30 Lunch
  Chair: Bob van Hilten
13.20 Psychiatric aspects of at-risk testing
  David Craufurd
13:40 How monogenetic is Huntington’s disease
  Alexandra Durr
14:05 Drug approvals for rare disorders- new trends in clinical trials
  Karl Kieburtz
14:30 The future clinics of Huntington’s disease
  Sarah Tabrizi
15:00 Closing remarks
  Jan Verschuuren
15:05 Tea/coffee break
  Walk to the Academy Building, Rapenburg 70 (20 min)
16:15 Farewell lecture (Academy Building)
  Raymund Roos
17:00 Drinks in the faculty club
Prof. dr. W.P. Achterberg
specialist ouderengeneeskunde, LUMC
Drs. N.A. Aziz
Prof. dr. B.C. Bloem
Mw. S.J. Booij
Dr. S.T. de Bot
dr. D. Craufurd
A. Durr
ICM Pitié-Salpêtrière Hospital - Sorbonne Université
Prof. Dr. J.J. van Hilten
K. Kieburtz
University Rochester medical Centre
B. Landwehrmeijer
Dr. R. Reilmann
Dr. W.M.C. van Roon-Mom
Prof. Dr. R.A.C. Roos
Neurologie Leids Universitair Medisch Centrum (LUMC)
Prof. S. Tabrizi
University College London, Institute of Neurology
prof. dr. A. Tibben
Leids Universitair Medisch Centrum (LUMC)
Prof. Dr. J.J.G.M. Verschuuren
Hippocratespad 21, 2333 ZD Leiden


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Niet LUMC Medewerkers betalen €75,-


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