NA Advocacy at the European Huntington’s Disease Network 6th Plenary Meeting
NA and Huntington’s Disease affect the same part of the brain and patients struggle with similar movement disorders and other symptoms. Although much more common than NA, HD is a rare condition and at the Advocacy we were grateful for the opportunity to learn more about the science, research approaches and funding policies of the European Huntington's Disease Network (EHDN) and its American parent organisation earlier this autumn.
On the first weekend of September Glenn and Ginger Irvine joined Adrian Danek, Benedikt Bader and over 700 health professionals and patient group representatives at the 6th Plenary Meeting of the EHDN in Prague. During the two days of intensive meetings and private conversation with colleagues we learned of the complexity and uncertainty of the basic science of HD and took away an appreciation of the policy of the EHDN’s American parent, CHDI, to fund research only when there is strong possibility of progress toward a potential therapy for HD.
|Adrian Danek, Benedikt Bader and Glenn Irvine with two posters by Ruth Walker and Adrian and Benedikt |
We had preliminary discussions about possible development of animal models of ChAc that could be treated by replacing the gene that is defective in ChAc with a healthy gene. All of this is expensive and a plan for future research needs direction. Of immediate value, we learned that the Public Library of Science is a web-based opportunity to register and share the results of experiments, a faster and more open route than the traditional scientific journals.
EHDN is a large, well-organised and funded infrastructure for large scale clinical trials on HD patients throughout Europe. It has an IT platform for communication tools in many European languages and is a forum for close cooperation of basic scientists and clinicians. Here at the Advocacy we have already established close connections with professionals working on HD and representatives from the HD community have frequently spoken at NA symposia.
EHDN has also accepted an NA module on its sophisticated Patient Case Registry. While the genetic source of HD is altogether different from the NA diseases, we have much in common and look forward to a continued sharing of information with the HD clinical and research community.
For more information on the Prague meeting, see the latest issue of EHDN News.