If you or a family member has Gaucher disease, you are not alone. Many in the Gaucher community have found it helpful to connect with other patients and family members of patients.
Support and practical suggestions from other patients and families can be extremely helpful in navigating challenges related to Gaucher care. The resources listed below can help you connect with others.
Connect with others in the Gaucher community
Gaucher Community Alliance (GCA)
GCA is an organization created by Gaucher patients for Gaucher patients. It supports patients and families through peer-to-peer support and education, advocacy, patient and family resources and networking.
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.
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.
Gaucher Disease Types 2/3 Facebook Group
This a closed Facebook group is dedicated to providing support for families of children diagnosed with Neuronopathic Gaucher disease type 2/3. Find them on Facebook and request to join.
Connect with other Patients, Parents and Caregivers
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.
Courageous Parents Network (CPN)
CPN is an educational platform that orients, empowers and accompanies families and providers caring four children with serious illness. It provides videos, podcasts, printable guides and blogs from other families as well as pediatric care providers to help parents.
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.
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.
Learn about more resources for connecting with others with Gaucher disease.