We have gathered useful resources for patients with Gaucher disease and their families to provide additional support, information and inspiration.
The National Gaucher Foundation (NGF) website provides information on financial support to help cover the cost of treatment, as well as resources related to prenatal screening and genetic counseling for Gaucher disease.
Caregiver Action Network
The Caregiver Action Network seeks to improve the quality of life for more than 90 million Americans who care for loved ones with chronic conditions or old age. The nonprofit organization provides free education, peer support and resources to family caregivers across the country.
E-Pal Connection Program
The E-Pal Connections program has been created in order to facilitate communication and develop relationships among children and teens ages 5 – 17 with Gaucher disease. Children and teens, facilitated by their parents, can connect through FaceTime, Skype, email, or another communication method of their choosing.
Expression of Hope
Expression of Hope is a global program featuring works of art by people with lysosomal storage disorders (LSDs).
Gaucher Disease Facebook Group
The Gaucher disease Facebook group is an excellent resource that helps patients with Gaucher disease, family members and friends communicate with and support one another. Patients created and manage this independent, closed Facebook group. An administrator must approve new members.
Many people in the Gaucher community use this group as a way to ask questions to other patients who have been through similar situations. The group should not be used to give or receive medical advice.
Inspire Support Group
The Inspire Support Group is the leading social network for health that connects patients and caregivers in a safe permission-based manner.
Little Miss Hannah Foundation
The Little Miss Hannah Foundation seeks to enhance quality of life for young children, and the families of those children, with life-limiting rare diseases. The foundation also helps children with undiagnosed complex medical needs and those who have been placed in hospice or palliative care.
Lysosomal Disease Network
Although individually rare “orphan” conditions, the lysosomal diseases collectively affect 1 in 6,000 individuals and are responsible for a significant disability and disease burden. These diseases have become a test-bed for some of the most innovative and advanced experimental treatments, including treatment agents designed to cross the blood-brain barrier.
The rarity of each lysosomal disease means that no single medical research center has an opportunity to see the entire spectrum, or to acquire sufficient patient numbers to adequately test new therapies. The combined and integrated efforts of the NIH-funded Lysosomal Disease Network focus limited resources into a network of centers with expertise in one or more of these diseases in order to solve major challenges in diagnosis, disease management, and therapy. Solutions to these problems will have direct impact on patients suffering from lysosomal diseases, and important implications for medical practice.
National Organization for Rare Diseases (NORD)
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases.
National Center for Advancing Translational Sciences (NCATS)
This organization provides a collection of resources, Rare Diseases Resources, on topics of interest to the rare disease community. Included is information on rare disease social networks, online medical reference websites and rare disease events. NCATS is part of the National Institutes of Health (NIH).
PAN (Patient Advocate Network) Foundation
The PAN Foundation helps underinsured people with life-threatening, chronic and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.
The Patient Advocate’s Chronicle
The Patient Advocate’s Chronicle posts point-of-view articles, analysis, and expert interviews on medical and other areas of interest to the autoimmune and chronic patient community.
Rare New England
The mission of Rare New England is to bring together New England patients and families affected by rare and complex disorders. The organization creates awareness of available resources and offers educational opportunities to improve patient quality of life.
Resources for Building a Care Team
- National Directory of Psychologists
- National Directory of Psychiatrists
- National Directory of Social Workers
Yahoo Gaucher Disease Discussion Group
This discussion group enables individuals who are concerned with Gaucher disease and similarly genetically-based diseases to network and communicate. This is a membership only group and requires subscription.
Yahoo Gaucher Disease Types 2 & 3 Discussion Group
This is a private discussion group dedicated to parents, family members and caregivers of children who have Gaucher disease type 2 or type 3. It is a membership only group and requires subscription.