We are active and proactive: Update on Peer Support Groups
 
VHL Canada has identified a significant need for peer group support for Canadian VHL patients (including their families and caregivers). How? I’ve been diagnosed with VHL since 1985; always lived in Toronto; been chair for another Canadian charity; a strong advocate for peer support for VHL patients; and have personally spoke to over 90 VHL patients across Canada since 2013...

Peer support groups are based on the self-help or mutual-aid model. According to the Charities Directorate of CRA, they are established "typically in recognition of the therapeutic or other benefits of peer support, to help individuals help themselves..." (Policy Statement CPS-024, Guidelines for Registering a Charity: Meeting the Public Benefit Test).
 
Research suggests that peer group support for chronic illness improves patient health and wellness. Patients who are more involved in their health care tend to get improved outcomes and satisfaction. Moreover, VHL Canada believes that patient peer support offers motivation, optimism, and hope.
 
To reach out to our rare disease population in a vast country, VHL Canada will provide peer support groups in various formats, free and at flexible times, for patients and others affected by VHL in Canada. 1-2 trained peer support volunteers will be required to schedule and moderate the groups to enhance the process of peer groups.

• We have been recognized (and vetted) as a VHL patient support organization by Orpha.net International Database and Canadian Institute of Health Research (CIHR)
• We are an affiliate member of Canadian Organization of Rare Disorders (CORD)
• Our purpose and activities are approved and registered with Canada Revenue Agency Charities Directorate

 Scheduled "live" group chats are every Wednesday 7-9 pm EST

• These are synchronous online text conversations (on Facebook at this time) that are always facilitated by 1-2 trained peer support volunteers
• 2 in August were initiated by request but still facilitated
• All peers (VHL patients, family, and caregivers) in attendance are from Canada (e.g. BC, AB, SK, MB, ON, QC, NS, and NL)
• May-Aug ’16 there have been a total of 17 group chats with 110 peers

• Always facilitated by 1-2 trained peer support volunteers
• All peers (VHL patients, family, and caregivers) in attendance are from Canada (e.g. BC, AB, SK, MB, ON, QC, NS, and NL)
• Apr-Aug ’16 there have been a total of 5 calls with 11 peers

 












Please visit our Group Support Page and Public Awareness Facebook Page

Thanks for reading our e-newsletter,

Henry
Chair