Saturday May 28, 2016 in Copenhagen, Denmark.
The 2016 Public Awareness day was organized in cooperation with the EAN – European Academy of Neurology, EFNA – European Federation of Neurological Associations, and the Danish Huntington Association.
In his welcoming speech Professor David B. Vodušek, Chair of the EAN Liaison Committee, emphasized the importance of cooperation between EFNA, patients organizations, and EAN.
Bea De Schepper, president of the European Huntington Association and treasurer of EFNA, talked about the many emotional aspects affecting families living with Huntington’s Disease (HD) patients and how this situation can empower people to get engaged. The example of Bea’s nephew, Jeroen, who biked 12.000 km through 18 countries, raising awareness for HD was put forward.
Professor Bernhard Landwehrmeyer, of the European Huntington Disease Network, presented an overview of the past, present and future research for patients with HD, their families and carers. Professor Landwehrmeyer is a champion in presenting complex scientific information in layman’s language.
The interaction and dialogue with the attendees was excellent.
The rest of the afternoon was dedicated to the Danish HD family members focusing on “caring for carers” and living with HD.