National Gaucher Foundation
(NGF)
The NGF provides support services, including conferences, patient support
groups, written information, and financial assistance, to people with
Gaucher disease and their families. The NGF also works with physicians
and researchers to increase the scientific and medical understanding
of Gaucher disease.
The NGF also offers a booklet, "Living
with Gaucher Disease: A Guide for Patients, Parents, Relatives, and
Friends." This booklet, available on-line and in printed form, reviews
the history, symptoms, diagnosis, treatment, and social/emotional aspects
of Gaucher diease
International Patient Advocacy Association (IPAA)
The IPAA also provides resources and support to those affected by Gaucher
disease. The Association's major program is the Gaucher Network, which
matches callers with contacts who can discuss the medical, emotional,
and social issues surrounding Gaucher disease.
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.
Children's Gaucher Research
Fund
This organization raises funds for research aimed at finding a cure
for Gaucher disease, types 2 and 3. The Fund also provides support services
to affected families.
Gaucher patient listserv
This is a discussion list for people interested in Gaucher disease.
To subscribe, send a message to: gaucher@neuro-www2.mgh.harvard.edu.
You will be sent further instructions by e-mail.
Gaucher Clinical Perspectives newsletter
This newsletter, published quarterly, features articles on Gaucher disease
for health care professionals. To subscribe to Gaucher Clinical Perspectives,
contact Genzyme at (800) 745-4447.
Horizons
newsletter
This free newsletter, published quarterly, features articles on Gaucher
disease for patients. To subscribe to Horizons, contact Genzyme
at (800) 745-4447.
The
Gaucher Buddy Program
This program consists of an informal network of people with Gaucher
disease and their family members. Buddies provide each other with support
through the sharing of experiences.
The International Collaborative
Gaucher Group Registry (ICGG)
The ICGG Registry collects and analyzes clinical information on people
with Gaucher disease. The goal of the registry is to increase the medical
understanding of Gaucher disease and treatment. So far, over 1700 people
worldwide are enrolled in the registry. The UCSF-Stanford Lysosomal
Disease Center participates in the ICGG Registry. If you are a patient
at the Center, and you would like to be enrolled, contact Cindy Johnston, MS .
Patient
Assistance Program
This program provides assistance with any insurance issues and/or financial
concerns associated with Cerezyme® treatment. The program is available
to all individuals with Gaucher disease, their families, and their medical
providers. The Patient Assistance Program is administered by Genzyme
Corporation, manufacturers of Cerezyme®.
Mazornet Guide
to Jewish Genetic Diseases
This online guide provides information on Gaucher
disease and other genetic diseases that occur more
frequently in the Jewish population.
Gaucher patient advocacy meetings at UCSF and Stanford
These meetings, co-sponsored by the National Gaucher Foundation and
the UCSF-Stanford Lysosomal Disease Center, feature talks by experts
in Gaucher disease and by patients and representatives of patient groups.
The meetings also provide an opportunity for patients with Gaucher disease
and their families to meet others from their area. For information about
upcoming meetings, contact Cindy Johnston, MS.
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