One of the Society’s key roles is to advocate on behalf of families affected by HD. We advocate for Canadians living with HD and enhance the services we provide to them by maximizing our connections with families and individuals living with HD. An area that we have been instrumental in encouraging change is the Special Diet Allowance which was reinstated in January of 2012. By helping Ministry officials understand that weight loss is a biological reality in this disease, we were able to put Huntington’s on the list of conditions eligible for the Special Diet Allowance.
The Genetic Non-Discrimination Act was passed into law on May 4, 2017. We should all be very proud that our community members, in all Provinces and Territories, now have their genetic test information protected.