4 Purposes & Activities Description* from Constitution:

#1: To help patients and family deal with the effects of VHL in their lives by providing a social-emotional support system

• Operate a Toll-Free National Phone Help-Line that offers information and support, live or call-back, 5 days a week. This service will be coordinated and covered by the National Outreach Volunteer (NOV) who has a background in mental health and social work. At least 1 other volunteer will eventually be trained. Optional: Video calls.
• Provide regular Email support and contact through an official email address. This email will be covered by NOV, but other volunteers will be used as needed.
• Provide annual phone check-in’s with all constituents. Calls will involve updates, support, and feedback forms. NOV will be responsible for these, but can also delegate local (provincial) volunteers as needed.
• Sponsor and moderate online discussion groups (e.g. Facebook and other forums). NOV will monitor the online groups 5 days a week, but other volunteers may be involved. Optional: group phone and video calls.
• Strive for Annual Local Informal Get-togethers in all provinces or regions that will be hosted by local volunteers.

#2: To help patients and families gain knowledge of various aspects of  VHL through providing reliable resources and means to share experiences and information

• Create, maintain and regularly update an official website. NOV will be responsible for the website. Content will include links to reliable information on VHL-related medical, psychosocial, and research subjects. Content will also include Canadian VHL Community updates and news
• Provide the phone, email, online support, and get-togethers that will also be a way (peer interaction) for those affected by VHL to share experiences and information. NOV and (local) volunteers will be needed.
• Provide educational opportunities like workshops, guest speakers and webinars for constituents and volunteers

#3: To promote and co-ordinate a network of provincial or regional chapters who will provide local support to those affected by VHL

• Provide guidance and support through phone calls, emails, and quarterly volunteer meetings or conference calls
• Provide proactive outreach to “new” constituents and local volunteers

#4: To promote research and medical and psychosocial care through financial means and collaboration that will benefit those affected by VHL in Canada

• Provide direction from the board of directors on how funds will be used towards VHL-related research and medical and psychosocial care (e.g. equipment, travel costs, bursaries). Volunteer and constituent input may be considered, too. 
• Consider donating to, and collaborate with, qualified donees like other national charities or groups who have activities that are related to our purpose
• Consider using or “contracting” Intermediaries in or outside of Canada to fulfill this purpose

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*National Outreach Volunteers will devote about 80 hours per month. NOVs will provide stability, consistency, and passion etc.