Resources

What You Need to Know About VHL, the VHL Handbook, is now available. Copies will be mailed to all members in December. This important booklet describes von Hippel-Lindau disease in simple language, provides hints for managing your health, and a glossary of terms your medical team will use.

Developed by a team of VHL family members and health care professionals. Additional copies are available for $5 from the VHL Family Alliance, 2001 Beacon St, Suite 208, Boston, MA 02135-7787 USA.

Candlelighters Childhood Cancer Foundation maintains a list of organizations that grant wishes for children with chronic or life-threatening illness. Send 50 cents to Candlelighters, 7910 Woodmont Ave, Suite 460, Bethesda, MD 20814.

Starlight Foundation (U.S., U.K., Australia and Canada) brightens the lives of seriously ill children by granting wishes for children 4-18 who have an illness which causes continuing pain and discomfort. There are no income requirements. For more information, contact Starlight Foundation, 75 Saint Alphonsus St., Suite H, Boston, MA 02120, Tel: (617) 739-0020. Canada: (514) 737-4447; England (71) 430-1642; Australia (02) 660-0144.

For access to the national Brain Tumor Support Group Network, with more than 100 groups around the country, call the National Brain Tumor Foundation at 1-800-934-CURE. NBTF, 323 Geary Street, Suite 510, San Francisco, CA 94102, (415) 296-0404, Fax: (415) 296-9303.

The American Brain Tumor Association provides patient services and educational materials, free of charge. Funds research nationwide, and works to educate the public about brain tumors. Publications include a Primer of Brain Tumors: A Patient's Reference Manual, Coping with a Brain Tumor, and a newsletter. ABTA, 2720 River Road, Des Plaines, IL 60018, (708) 827-9910, (800) 886-2282.

As published in the VHL Family Forum 1:4, December 1993. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.