Fabry Disease
Fabry Community
This program provides support services to people with Fabry disease
and their families. Services include: educational materials, health
insurance counseling and assistance, and a network of on-call health
care provides to answer medical and other questions. Fabry Community
is administered by Genzyme Corporation, manufacturers of Fabrazyme®.
Fabry International
Research Exchange (FIRE) Registry
This Fabry registry is sponsored by Transkaryotic Therapies, Inc. (TKT).
Fabry Registry
Established in 2000 and sponsored by Genzyme Corporation, this registry collects and analyzes clinical information on people with Fabry disease. The goal of the registry is to increase the medical understanding of Fabry disease and treatment. So far, over 400 patients worldwide are enrolled in the registry. If you are a patient at the Center, and you would like to be enrolled, contact Cindy Johnston, MS.
Fabry Support and Information Group
(FSIG)
FSIG is a support group organization that provides educational information
on Fabry disease, as well as emotional support through networking. The
FSIG web site contains an on-line message board and hosts weekly on-line
chats. FSIG also produces a semiannual newsletter, featuring articles
on Fabry disease for patients.
The International Center
for Fabry Disease
Located at the Mt. Sinai School of Medicine, the Center's staff consists
of Fabry experts from many medical specialties. The Center offers information
on Fabry disease, as well as a mailing list for updates on progress
in the research and treatment of Fabry disease.
The International Patient Advocacy Association (IPAA)
The IPAA also provides resources and support to those affected by Fabry
disease. The Association can help people with legal and insurance issues
and can direct them to appropriate educational materials and patient
meetings.
The National Tay-Sachs and Allied Diseases
Association (NTSAD)
NTSAD administers a program called the Parent Peer Group, a support
group of about 400 families with NPD and related diseases. The NTSAD
also maintains a resource list of health care workers, therapists, and
other professionals familiar with these diseases.
The National Organization for
Rare Disorders (NORD)
NORD is dedicated to the identification, treatment, and cure of all
rare diseases, which affect fewer than 200,000 Americans. NORD maintains
a medical information database for these disorders, as well as a support
group database. The organization also provides grants for researchers,
a networking program for patients, and many other services.
The Lysosomal Storage Disease Network
(LSDN)
This group provides medical information on lysosomal storage diseases,
including Fabry disease. The LSDN also helps to link academic medical
centers that treat patients with these conditions, so that health care
professionals may share their expertise with one another. The LSDN is
administered by Transkaryotic Therapies, manufacturers of Replagal.
Fabry patient advocacy meetings at UCSF and Stanford
These meetings, co-sponsored by the Fabry Support and Information Group
(FSIG) and the UCSF-Stanford Lysosomal Disease Center, feature talks
by experts in Fabry disease and by patients and representatives of patient
groups. The meetings also provide an opportunity for patients with Fabry
disease and their families to meet others from their area. For information
about upcoming meetings, contact Cindy Johnston, MS.
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