Role of Peer Facilitator and what Facilitation Means .pdf
Ethics for Facilitators .pdf
The “Shoe Box”: The records, documents and information that are key to your charity’s operations .pdf
Genetic and Rare Diseases Information Centre (GARD)
"Von Hippel-Lindau (VHL) disease is an inherited disorder characterized by the abnormal growth of both benign and cancerous tumors and cysts in many parts of the body..."
A 501(c)(3) non-profit
1208 VFW Parkway, Suite 303
Boston, MA, USA, 02132
"The pre-eminent resource for patients, caregivers, researchers, and the medical community... Central to patient care is the VHL Handbook: What You Need to Know About VHL, written and published by VHLA" also sign up for free download
Click on the physical manifestation and get treatment information excerpts from their patient handbook
BLOG posts regularly on coping tips and experiences - see recent list and sign up
Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel–Lindau disease (European Journal of Human Genetics)
Positive Coping with Health Conditions, A Self-Care Workbook
a self-care manual authored by scientist-practitioners with expertise in issues relating to coping with health conditions. This manual is designed for individuals who deal with health conditions, including patients, physicians, psychologists, nurses, rehabilitation professionals and researchers.
10 steps for coping with a chronic condition (Harvard)
It pays to organize your approach to heart disease or any chronic medical problem.
Coping with Chronic Illness (Medline Plus)
Support Groups, make connections, get help [and give help] - Mayo Clinic
While not everyone wants or needs support beyond that offered by family and friends, you may find it helpful to turn to others outside your immediate circle...A support group shouldn't replace your standard medical care, but it can be a valuable resource to help you cope..
Kids Help Phone - is a Canadian and world leader known for our expertise and continuous innovation as Canada’s only 24/7 counselling and information service for young people... Since 1989, our trained, professional counsellors have been listening to kids.
Wellspring is a network of community-based support centres offering programs and services that meet the emotional, social, practical and restorative needs of people living with cancer and those who care for them. Wellspring programs are offered free of charge. There are eight Wellspring centres located in communities across Southern Ontario and Alberta.