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We are a dedicated group of volunteers

We believe in the strength of a local community

We are a group of caring British Columbians that have a personal connection with FSHD in their life.  We are patients; parents; family members; caregivers; health professionals; and loving friends.

We came together out of a sense of loneliness; helplessness; frustration; fear and anxiety. After a diagnosis, people with FSHD find themselves lost, with limited local resources to support them.

It doesn't have to be this way. We can navigate this disease together.

 

Our Goals

Build a Local FSHD Community

Provide a place of safety, comfort and community; and a soft local landing spot for British Columbians newly diagnosed with FSHD.

Join our private Facebook group to connect with with members in Vancouver, Victoria, Kelowna and across BC. 

There is power in numbers and we are stronger together! 

Awareness and Education

Information is power, especially for those navigating a rare disease. ​

Together we can make the journey easier by curating and sharing key information for those affected by FSHD in British Columbia. 

Our Facebook group is home for most updates. Join our mailing list Subscribe Form to stay informed of upcoming local events.


Improve our Local Healthcare

FSHD is a rare disease, which as a patient community we need to be organized to have impact.

By all seeing the same group of healthcare providers, we can educate them through our knowledge and experience so they can offer the entire FSHD BC patient group a better standard of care.

We will launch local a local list of healthcare resources early 2022. If you have any specialists that give you great support, please email us the details.