🍁 VHLC like other national support models
With the VHL peer community network in Canada, we are much smaller and basic, but I have tried to emulate the support and awareness network that the VHL Alliance has in the US with local VHL patients, family members and community*. Henry
- In each US state/region (“Ambassadors”)
- Provide outreach, fundraising and awareness activities
- Link to clinical care centre volunteer liaison
- (2 paid VHLA staff coordinate all volunteers. One staff is also responsible for online and phone group support. Another staff is in charge of charity awareness and fundraising).
- Note: many doctors, VHL researchers and other professionals seem to do a lot for VHLA, e.g. councils, education, research grant program and family conferences).
*Source: VHLA Volunteer Manual 2020
*At VHL Canada, we only have 1 professional level peer support volunteer who covers “everything” at this time. (e.g. online group and individual support, inquiries, social media, blogs, awareness, advocacy)