CARING FOR YOUR HEALTH

Until 1993, little was known about defenses against VHL. Through concentrated sharing of their experiences and their expertise, family members and health care professionals and researchers are making progress, and we are learning better defenses.

Information

Information is the key to success in managing a rare condition like VHL. You cannot expect every health professional to know about VHL. You need to be involved in your own health care, keep track of your appointments, follow up when necessary, and take an active role in managing your health.

• VHL Handbook: What you Need to Know about VHL
• VHL On-line NewsLetter
• Local and Online Support
• VHL Family Alliance Clinical Care Centers program
• How Are You! Manage Your Own Medical Journey, a book by Patricia Foote
• Nutrition for cancer prevention
• see Bookstore for additional helpful titles

Your Key Contributions to research — not just money!

• VHL Tissue Bank keeps surgically removed tumor tissue on file so that researchers will have the cells they need to study.
• VHL Research Database collects information from affected people so that we can provide some statistical information to researchers, making it easier for them to obtain data and therefore encouraging them to do more research on VHL.
• And of course, helping to support research, through fund-raising as well as your own donations. Every little bit helps! It is only through research that we will find better ways to keep tumors from forming, or at least keep them small, and reduce the need for surgical intervention.

Services

• This Web service and patient inquiry account info@vhl.org
• Toll-free patient information hotline, U.S. & Canada, in English and Spanish 1-800-767-4VHL
• Handbook for patients, families, and medical professionals
• Quarterly VHL Newsletter
• Tissue Bank
• Support for research
• Online support in many local languages
• Meetings (see below)

Other family members at risk

• DNA testing for VHL is available now to most families and can be a useful tool in determining who is (and is not) at risk.
• We can supply Brochures to share with relatives and friends. Samples are available with your membership packet, and more can always be obtained from VHLFA

Local support groups

Since we are a relatively small population, thinly spread all over the world, we are mostly a communications network — web, telephone, fax, E-mail, ham radio — whatever works! There are groups formed or forming in all regions of the United States, as well as in Canada, and other countries.

• VHL Family Support Chapters
• International affiliates
• Call or write to us and ask for a contact in your own area

VHL Symposia (every two years) and conferences (annually)

• A good way to meet others with VHL, and to interact with some of the medical experts who are studying this disease and have new diagnostic techniques and treatments to share.
• Current listing of forthcoming meetings
• Reports from prior meetings
• Report from the Cleveland Meeting, October 2002
• Report from the Padua Meeting, May 2002
  

Membership

Your donations are what makes our services possible. Please send what you can to:

We're delighted that you found this page, and look forward to meeting you and working with you. Our goal is to make the world better for ourselves and our children, and, no matter what comes, to make sure we all have a Very Happy Life!