SOURCES OF INFORMATION AND SUPPORT
There are many rare disease support groups and advocacy organizations that
may serve as a source of information and support for patients with type 1 Gaucher disease.
JEWISH GENETIC DISEASE CONSORTIUM
This group gives your patients access to information about diseases like Gaucher that
have a high incidence among those of Ashkenazi Jewish descent. Contact them to connect
with relevant organizations.
NATIONAL GAUCHER FOUNDATION
Find information on the latest Gaucher disease research, get
financial assistance, discuss legislative issues, and find outreach programs.
Also participate in live web-based meetings, national conferences, and patient meetings.
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
This organization provides information about rare diseases like Gaucher,
but also has more specific functions that may be useful for both patients
and HCPs. These include referrals to patient organizations, information
about research grants and fellowships, advocacy and medication assistance
programs, and networked peer-to-peer support for those with Gaucher disease.
NATIONAL SOCIETY OF GENETIC COUNSELORS
Connect your patients with this organization so they can find genetic counseling
in their area for inherited conditions like Gaucher disease.