Carers National in the U.K. provides a support network for people caring for family members with illness or disability. 20-25 Glasshouse Yard, London EC1A 4JT , UK, Tel: +44 (0)20 7490 8818; Fax: +44 (0)20 7490 8824; http://www.carersuk.demon.co.uk/ There are groups in Northern England and Ireland as well.

Well Spouse Foundation, New York, focuses on support for spousal caregivers. Regional support groups, national conference, getaway weekends. 30 East 40th Street PH, New York, NY 10016; Tel: (212) 685-8815, (800) 838-0879; Fax: (212) 685-8676; http://www.wellspouse.org

Online forum CareShare: Audrey Guggenheim has recently started CareShare, an online forum for caregivers, at www.delphi.com/careshare . Her hope is that it will become a community "where anyone caring for a seriously ill person can share experiences, ask questions, support one another, and, even gripe. Caregiving is tough enough ... why go through it alone?" For further information, call 212-765-9596 or send e-mail to agsente@pipeline.com.

Children:

Band-Aides and Blackboards: Joan Fleitas, a nurse and nursing professor at Fairfield University in Connecticut, has constructed a website about kids growing up with medical problems. Its goal is to help people understand what it's like, from the perspective of the children and teens who are doing just that. Joan is passionate about her website "that highlights the narratives of children with serious medical problems. It is a peek into the world as they experience it and is designed to sensitize others to the pictures that they paint through their words." See http://www.faculty.fairfield.edu/fleitas/contents.html

Insurance Information:

"Protecting Your Health Insurance Coverage" is a 45 page booklet outlining five key steps that consumers can take to understand their Federal health coverage protections under HIPAA, produced by The Private Health Insurance Group (PHIG) at The U.S. Health Care Financing Administration (HCFA). You may order single hard copies by calling 1-800-633-4227. For 2-100 hard copies, fax your request to 1-410-786-4786, or download the booklet by clicking on "Publications" on the home page at http://hipaa.hcfa.gov

HIPAA OnLine responds directly to individual concerns about health coverage under the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA), answering questions about: pre-existing conditions, special enrollment, certificates of creditable coverage, or how to cope with the denial or loss of health coverage, a welcome new tool has arrived. A confidential, free, easy-to-use, 24-hour-a-day, Internet-based tool, HIPAA OnLine helps answer consumer questions rapidly and accurately on the Federal health coverage protections provided by HIPAA, and how their health coverage is affected by life events such as: job changes, marriage, divorce, birth, adoption or death. The website works by guiding users through a series of questions that often lead to local resources for more information. HIPAA OnLine is on the Internet, at http://hipaa.hcfa.gov by clicking on the HIPAA OnLine logo. It is also available on CD. To request a CD, click on the Help icon on the HIPAA OnLine Web page or send an e-mail to hipaacd@saic.com (quantities are limited).

As printed in the VHL Family Forum 9:2, June 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.