We are a group of committed volunteers dedicated to growing a national organization serving Canadians affected by PSP, MSA and CBD. All of our board members have personal connections to the illness through our loved ones. Having experienced the frustration felt by so many families affected by rare diseases – difficulty getting a diagnosis, healthcare teams unfamiliar with the illness, lack of information and support – we are passionate about not wanting another family in Canada to face the same challenges.
We have benefitted from relationships and training opportunities with other international PSP charities and rare disease umbrella organizations including CORD (Canadian Organization for Rare Disorders) and Eurordis (Rare Diseases Europe). This has helped equip us in our mission to grow support networks, provide educational materials, connect with healthcare professionals, and stay up to date on current research directions.
The PSP Society of Canada is a federally registered non-profit organization, with an application for charity status pending. Prior to establishing independence as the PSP Society of Canada, we worked closely with the US charity CurePSP, and were previously known as CurePSP Canada. We enjoyed getting to know many of you during this period of our development and look forward to continuing to support you moving forward.