Background About 40 years ago the Dutch Huntington Association was funded and from then on this lay organisation, supported by ‘experts-in-the-field’, strived for coordination of care and dissemination of knowledge on HD. Specialised nursing homes, taking care of late stage HD patients, improved their quality of care through many years of practice based experience. From 2007 on these institutes supported the initiative from the lay organisation to develop a network for knowledge and multidisciplinary care.

Aims How to make quality care available to all Dutch HD patients and their families and how to find evidence for this care.

Methods In the formation of a nationwide network (Huntington Network Netherlands, HNN) of professionals and lay experts harmonisation of guidelines, education and research projects are initiated. To develop this network regular meetings are organised and exchange of professionals is enabled. International guidelines are discussed in groups of para-medic professionals. Availability of knowledge, advice and support is provided from either the HD association or professional members of the network.

Results Regular meetings of a steering committee lead to the formation of this solid network which already resulted in consensus on education programmes. Close contact with academic research groups will lead to practice driven research proposals. A front office with easy access to knowledge for HD-patients, families, and care workers at home will be developed.

Conclusions and future perspectives Nationwide similarity in education for nurses, paramedical and medical personnel leads to easy access to practice based care for patients and family. Allignment of clinimetric instruments may lead to research projects on efficacy of treatment regimens.