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.
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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.
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It doesn't have to be this way. We can navigate this disease together.
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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.
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Join our private Facebook group to connect with with members in Vancouver, Victoria, Kelowna and across BC.
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There is power in numbers and we are stronger together!
Awareness and Education
Information is power, especially for those navigating a rare disease. ​
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Together we can make the journey easier by curating and sharing key information for those affected by FSHD in British Columbia.
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Our Facebook group is home for most updates. Join our mailing list Subscribe Form to stay informed of upcoming local events.
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Improve our Local Healthcare
FSHD is a rare disease, which as a patient community we need to be organized to have impact.
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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.
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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.