Avanta Publishing Company in Chapel Hill, NC, The National
Fragile X Foundation in Denver, CO and the Fragile X Clinic at Duke
University Medical Center, Durham, NC have introduced a new
subscription-based newsletter called National Fragile X Advocate.
The newsletter, which was launched in January, 1995, is distributed
bimonthly (six times a year) for the purpose of promoting an
awareness of and advocating for improved services for children,
adolescents and adults with fragile X syndrome and their families.
The National Fragile X Advocate publishes and disseminates new,
pertinent and often inspiring information written by and geared to
professionals and parents. The annual subscription rate for
individuals and non-profits is $36; $49 for institutions. Call
800-434-0322 or write National Fragile X Advocate, P.O. Box 17023,
Chapel Hill NC 27516-1702.
The National Neurofibromatosis Foundation, Inc posted a notice in the Summer 1995 issue of Neuro-fibroma-tosis (Volume 16, No.4) asking any of their readers who are having trouble obtaining health insurance for someone with NF to notify the National Neurofibromatosis Foundation. The Foundation is collaborating with the American Medical Association (AMA) in gathering anecdotal information about incidents where insurers or health plans have denied or stalled authorization for care. They are interested in any information related to patient denials of care, inappropriate health plan practices, including preauthorization requirements, failures to refer patients to specialists for care, other policies that can be detrimental to quality care and the ability of physicians to serve as patient advocates.
The goal is to build a solid data bank with the AMA that will enhance our knowledge of current health plan delivery and also to support educational and advocacy initiatives to protect patient care in today's rapidly changing health care system.
Send stories to the National Neurofibromatosis Foundation, 95 Pine
Street 16th Floor, New York, NY 10005. Fax: 212-747-0004 e-mail:
NNFF@aol.com. Indicate in your communication whether you are
available for follow-up interviews and if so, how you can be
reached.
To receive a copy of the 1995 Resource List, send a 9" x 12" self- addressed envelope with a $3.00 stamp attached to the address listed above.
Contact Betsy Wilson, Director of Let's Face It if you want more
information about this exciting organization.
We wish to announce the formation of a new organization for parents of children with holoprosencephaly. The goals of this network will be to help others understand and meet the many challenges presented by these children, exchange information and, along the way, establish friendships with others who are experiencing many of the same problems.
To our advantage, we have gathered a team of three medical advisors
who have extensive experience in both the medical care of children
with holoprosencephaly and research into its causes. An
introductory packet of information is available. We ask for a
small $5.00 fee to cover copying and postage costs. For more
information, please contact: Suzanne M. Renfroe at the above
address.
