Skip the Top Navigation                   BASIC FACTS
                  ABOUT VHL
        CARING FOR
        YOUR HEALTH
         RESEARCH
        
        PROFESSIONAL
        INFORMATION
       ABOUT VHL
       FAMILY ALLIANCE
Skip The Left Navigation

Home

 

Site Search

 

Current Issue

 

Printable Copies

 

Contact Us

 

Click to Donate

 

2008 Issues

 

2007 Issues

 

2006 Issues

 

2005 Issues

 

2004 Issues

 

2003 Issues

 

2002 Issues

 

2001 Issues

 

2000 Issues

 

1999 Issues

 

1998 Issues

 

1997 Issues

 

1996 Issues

 

1995 Issues

 

1994 Issues

 

1993 Issues

 

 

Resources

December 1993
Download a printable copy of this issue

 

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.