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HD Coalition for Patient Engagement (HD-COPE)

HD-COPE is a new international collaboration between the Huntington Society of Canada, the Huntington Disease Society of America (HDSA) and the European Huntington Association (EHA). HD-COPE was formed to replace the current ad hoc approach to incorporating the patient-voice in global therapeutic development efforts for HD. The group’s role is to communicate the HD community’s experiences and needs to regulators, industry and researchers.

In February 2018, the first HD-COPE meeting was held in London, England with four Canadians, six Americans and 10 Europeans who are personally affected by HD. The meeting included clinical trial training, a visit to a research lab and a meeting with a pharmaceutical company to give family members impacted by HD the opportunity to provide first-hand knowledge of the challenges of living with HD. The support of donors like you has helped to ensure that this is the first of many interactions for the group and that it will grow over time to include more family members and HD organizations from around the world.

HD-COPE from European Huntington Association.

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