Niemann-Pick 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 Niemann-Pick Disease
Foundation (NNPDF)
This organization is dedicated to: promoting NPD research, encouraging
the sharing of research findings, supporting legislation that positively
affects those with NPD, and providing information and emotional support
to families affected by NPD. The NNPDF's services for families include:
an annual conference, a semiannual newsletter, a membership directory,
and an e-mail discussion list.
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 International
Center for Types A and B Niemann-Pick Disease
Located at the Mt. Sinai School of Medicine, the Center provides information
and support for patients with types A and B NPD, as well as for scientists
and physicians interested in these disorders.
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.
Niemann Pick Disease Type B Registry
A joint initiative of the Mt. Sinai School of Medicine and the Genzyme
Corporation, the goal of the registry is to gain a better understanding
of the progression and variability in type B NPD by documenting the
clinical findings in patients with the disease.
The Ara Parseghian Medical Research
Foundation
This foundation promotes interaction among researchers working on type
C NPD and related diseases. It also funds research projects that may
lead to a treatment of type C NPD.
National Federation for Jewish Genetic Diseases, Inc. (NFJGD)
This information and support group provides services for the people
and families affected by diseases that are more common in the Jewish
population. The NFJGD can be reached at (212) 371-1030.
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