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.
How to Connect
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.
E-Pal Connections Program
The E-Pal Connections program is designed to connect children and their families with other Gaucher disease patients.
Gaucher Disease Facebook Group
The Gaucher disease Facebook group is an excellent resource that helps patients with Gaucher disease, their 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.
In addition, the National Gaucher Foundation has a public Facebook page.
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.
Learn about more resources for connecting with others with Gaucher disease.