Rare Should Not Mean Alone, a 35-minute video about individuals who have Treacher Collins Syndrome and their families, the physicians who provide treatment, the researchers conducting studies across the country, and the Treacher Collins Foundation. This closed caption video addresses issues faced by families at various times during the life cycle of an affected individual and is a comprehensive educational tool for families and professionals.

While this is not directly about VHL, Treacher Collins is a related disorder (another of the phakomatoses), and the information about living with a rare disease is quite pertinent. Local chapters may find it useful. To purchase a copy, contact the Treacher Collins Foundation, P.O. Box 683, Norwich, VT 05055. Tel: +1 (802) 649-3050

The VHLFA office in Massachusetts has one copy which may be borrowed for chapter meetings.

The National Association of Hospital Hospitality Houses, Inc., is an association of residences for outpatients and family accompanying patients being treated for serious illnesses away from home. Contact http://visit-usa.com/hhh/

National Association of Hospital Hospitality Houses, Inc.
4915 Auburn Avenue, Suite 303
Bethesda, Maryland 20814
301-961-3094 800-542-9730 Fax: 301-961-3094
[contact information updated 3/3/98]

The National Parent-to-Parent Network of Mothers United for Moral Support, Inc., (MUMS), connects families with similar conditions, esp. children with special needs. Free newsletter. Julie Gordon, MUMS, 150 Custer Court, Green Bay, WI 54301-1243, Tel: 414-336-5333; Fax: 414-339-0995.

When your mate can no longer be your social partner, parenting partner, financial partner, emotional partner, or sexual partner, you are a Well Spouse. Support meetings for husbands, wives, and partners of the chronically ill and/or disabled, U.S. and Canada. Contact Well Spouse Foundation, http://www.wellspouse.org, wellspouse@aol.com.

Long Distance Love is a national non-profit support network that links individuals with similar health problems for telephone support and correspondence. Contact Roxanne Black, P.O. Box 114, New Brunswick, NJ 08903, +1 (908) 418-1811 or http://www.njin.net/~ldl/

Cancer Care Counseling Line is a toll-free telephone counseling service of Cancer Care, a non-sectarian social service agency founded in 1944 to help cancer patients, their families and friends cope with the impact of cancer. (800) 813-HOPE.

As published in the VHL Family Forum, 4:1, March 1995. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.