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Join us at our next group online chat next Wednesday
Group Toll-free Call, June 11
For more info: http://www.vhlcan.ca/support-groups.html
May 18, 2016 7pm EST Group chat on Facebook Summary
5 Canadian VHL peers (patients/caregivers) from BC, MB, ON x 3
Main themes included:
Practical and Informational Challenges
- Travelling to medical appointments – one peer uses Canadian Cancer Society (volunteer drivers) - for example: 100- 200km trips
- BC family has used “Hope Air” www.hopeair.ca charity that helps with air travel for medical reasons (your province has to pay for procedure) for people in financial need
- Lost wages and sick/vacation days and
- Lack of government financial support –due to appointments etc
Emotional-Social Challenges
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Wednesday May 11 Group Chat Summary
8 VHL patient/caregivers from Canada present: NS, ON x 3, QC, MB, AB, and BC
We had a good live group chat on Facebook on Wednesday May 11. There were 8 VHL peers online live - most of them were just reading ("listening"). Please note: even if you're just reading posts, respect the group rules on confidentiality etc. Posted in "Canadian VHL Warriors"
Themes: FAQ'S especially for newer VHL patients/caregivers; and parents and children affected by VHL, eg. Kids can worry about a parent with VHL. Or parents can worry about kids with or without VHL, maybe because of VHL family members. In any case parent guilt is involved but you still have to be brave.
Join us in our next group online chat every Wednesday or
Group Toll-free Call, June 11
For more info: http://www.vhlcan.ca/support-groups.html
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