Support groups for those living with Gaucher disease can connect you with others who understand your condition firsthand and can share encouragement and understanding, practical support, and advice based on their experiences.
Other Gaucher disease resources, such as educational programs, financial assistance, and advocacy organizations, can also help support you in managing daily life with the disease.
How community helps
A supportive community can help you better cope with the challenges of Gaucher disease symptoms — whether you’re dealing with issues such as abdominal pain, bone problems, or fatigue.
Support from family, friends, and caregivers can truly make a difference, especially on days that are particularly difficult. Just knowing that someone is there to listen, lend a hand, or be present with you may make things seem more manageable.
If you’re hoping to connect with those who understand what it’s like to live with a Gaucher disease diagnosis, you may want to explore in-person groups or online forums.
Gaucher disease support
International and national organizations may have in-person or online Gaucher disease support groups for people with the disease, their family members, and caregivers, along with educational webinars, advocacy, podcasts, and other resources.
Your healthcare providers who are part of your Gaucher care team may be a good resource for learning about local support groups.
Online resources, such as social media, may also be a way to connect with others who are living with Gaucher.
Financial resources
Some national nonprofit organizations and pharmaceutical companies have financial support programs to help with managing the costs of Gaucher disease treatment and care.
Since financial support programs sometimes have eligibility requirements, such as income limits or insurance status, you may want to consider working with a social worker or a patient navigator when applying for financial assistance.
The PAN Foundation (Patient Access Network) offers financial assistance for out-of-pocket costs, such as copays, deductibles, and coinsurance.
The National Organization for Rare Disorders offers emergency assistance, travel assistance, and limited help with treatment-related costs, as well as a caregiver respite program.
The pharmaceutical companies that offer Gaucher disease treatments may also be a resource for financial support and assistance with navigating insurance coverage.
Educational support
International Gaucher Day is marked every year on Oct. 1 to raise global awareness and celebrate the strength of the Gaucher community.
The National Gaucher Foundation and Gaucher Community Alliance host webinars with expert speakers and community panels on topics such as treatment, family life, mental health, and clinical trials.
A strong support network can include your family and friends, as well as healthcare professionals, including a mental health therapist who can help with the emotional side of living with Gaucher disease.
Each person in your circle may support you in different ways, whether it’s offering practical help or emotional support, or managing medical care. Having someone who listens without judgment or checks in regularly can help you feel more connected and less overwhelmed.
As your needs change over time, your support network may shift, too. What matters most is knowing your support network is there for you.
Gaucher Disease Newsis 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.
