Finding community and strength with other Gaucher families

Last updated Aug. 15, 2025, by Mary Chapman

Gaucher disease can impact various aspects of daily life, from managing symptoms to navigating the emotions that come with having a rare condition or being a caregiver. Even with effective treatments and supportive routines, you may feel isolated or overwhelmed at times.

Finding your community can make all the difference. Whether you’re looking for emotional support, practical tips, or the reassurance that someone else understands, connecting with others who share your experience can offer strength, hope, and comfort.

Why having a community matters

When you live with or are a caregiver for someone with a rare disease like Gaucher, it can be easy to feel like few people truly understand what you’re going through. Connecting with others in the Gaucher community can help by:

reducing isolation and stigma
improving mental health
empowering you to participate actively in your care
providing practical advice
offering motivation and hope.

Finding your community can also enable you and your family to learn from experts, stay informed about the latest treatments and research, and share practical advice and resources.

How to connect with your Gaucher community

Your Gaucher community can include family members and friends, online forums, support groups, Gaucher care team members, and peers you meet at Gaucher events.

Share your journey with family and friends

Whether it’s you or your child with Gaucher, sharing what you’re going through with your loved ones can reduce stress and foster resilience. And the more your family and friends understand your experience, the better able they should be to support you.

For example, you may need someone to go to the doctor with you or help you with an errand you’re too exhausted, or in too much pain, to handle yourself. Sometimes, you may need someone to help you find support services, advocate on your behalf, or assist with financial planning.

Such connections can reduce anxiety and stress, which are common in progressive conditions like Gaucher.

Join online communities

Participating in online communities, such as the Facebook page of Gaucher Disease News, can offer emotional, social, and practical support.

Benefits can include:

better coping skills
feelings of empowerment
improved symptom management
lower stress levels
identification of resources
easier access for those with mobility issues.

The National Gaucher Foundation, which provides financial support, education, and resources, also has a community Facebook group and can help connect you with others affected by the disease. The organization also has an E-Pal Connections program for Gaucher families.

The International Gaucher Alliance, a global voice for Gaucher disease, also works to help connect people with Gaucher and caregivers worldwide.

Look for local support groups

Meeting in person with a Gaucher support group, rather than online, if possible, can be particularly meaningful, especially if you are feeling isolated. Such groups can become an integral part of your Gaucher community.

You can find local support groups through your healthcare team or organizations such as the National Gaucher Foundation.

Rely on your healthcare team

Your healthcare team members are a crucial part of your community. In addition to treating and helping you manage your condition or your child’s, they can help connect you with support groups and other resources.

Tips for finding your Gaucher community

To find community with other Gaucher families, you can:

search for and join Gaucher support and networking groups
attend Gaucher events, educational seminars and webinars, and advocacy meetings
read Gaucher Disease News columns to learn how others are managing the disease
request referrals to community support groups from your healthcare team
ask others with Gaucher or their caregivers for recommendations
host events for those with Gaucher and for caregivers
participate in Gaucher research.

No one should have to navigate Gaucher disease alone.

Whether you’re exchanging advice in an online forum, meeting someone face to face at an event, or leaning on a trusted friend or provider, each connection can offer meaningful support and make everyday life a little easier.

Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.