In an age when online forums have become the primary mode of communication and learning between members of a patient community, The Gaucher Alliances feels it is important to connect patients and families to one another for deeper learning and connection. Through in-person meetings, we aim to connect, educate, and empower Gaucher patients and their families. These meetings provide information and tools to best manage Gaucher disease through in-person connection and learning opportunities with medical experts, industry partners, and community peers.
The relationships made at these in-person meetings prove to impact patients in a positive way that online learning does not provide. The educational material and lifelong relationships that are forged at these meetings stand above and beyond and encourage patients and families how to self-advocate.
Every other year the Gaucher Community Alliance hosts a national conference in a location that has been approved by our Board of Directors. We try our hardest to offer varied geographic locations that are near airports for easy travel.
The national conference is a combination of patient and family only workshops for patients and family members by patients and family members and plenary educational presentations and workshops led by our medical and industry leaders. Subjects can include cutting edge scientific and clinical research; relevant community offerings; mental health awareness; art, music, and physical therapies; health and life insurance guidance; governmental and self-advocacy; story sharing circles; neuronopathic management; diet and exercise; physical therapy; stress management; and more.
A huge shout out to all those who attended the conference in Chandler, Arizona! The conference was packed with workshops and educational sessions, and it was truly special to bring together individuals and families from our Gaucher community with caregivers, healthcare professionals, and industry and community partners for a meaningful gathering filled with learning, connection, and shared experiences. Your presence helped make this conference a success and reminded us of the strength, resilience, and compassion that define our rare disease community. Every conversation, question, and story shared helped deepen our collective understanding and strengthen the bonds that unite us.
At the Gaucher Community Alliance, we believe no one should have to navigate Gaucher disease alone. Your participation reinforces our commitment to empowering patients and families through education, advocacy, research, and meaningful community connections. We hope you left Arizona feeling informed, supported, and inspired by the people you met and the knowledge you gained.
Let’s keep these connections going to support one another in the best ways to navigate our disease. We can’t wait to see you all again at the 2028 conference!! See here for photos and video of the conference!
Every other year, in the off years of the national conference, the Gaucher Community Alliance hosts two regional patient meetings. These meetings are also geographically chosen in varied locations so that we can have meetings over time in as many locations as possible.
Stay tuned for 2027 regional patient meeting locations.
