Patient Family Conference

Gaucher Patient & Family Conference
October 23 – 25, 2022

The conference was a success!

Photo credits: Glenn Katz
The Gaucher Community Alliance held its first Gaucher Patient and Family Conference on October 23 – 25 in Minneapolis, MN. The conference was designed to connect, educate, and empower Gaucher patients and their families by providing information and tools for them to best manage their disease and live fuller life. It was a wonderful opportunity for patients and family members to connect with and learn from their peers, the medical and research community, and other organizations and companies supporting Gaucher disease. Click on the links below to watch some of the innovative programming.

Playing on multiple screens throughout the conference, we offered a wonderful loop of the history of Gaucher research, treatments and support organized by former board member Nancy Masters. The slide presentation includes many who were involved in making the world a better place for people and families with Gaucher. This is an evolving collection of history, and if you have any information you’d like us to include, please contact us at and send it our way.

See the Fascinating Facts About Gaucher Disease here!

Day 1 Dinner Program

Watch Cyndi and Aviva’s welcome and special message from Senator Amy Klobuchar

Ted Meyer is an artist and patient advocate. Ted will share how his personal experience with Gaucher disease serves as his artistic motivation through his artmaking, photography, design, curation and publishing projects. Ted has shown his work in venues as diverse as the United Nations, the National Museum of Health and Medicine, UCLA, the Bravard Museum of Art, St. John the Divine, and galleries in Asia and Europe.

Click to Watch

Here is a link to Ted Meyer’s slides.

Day 2 Workshops

Open to patients and families only.
Hands-on and interactive workshops led by patients and family members for patients and family members. Experience, share, and bring home self-advocacy tools. Enjoy a sample of materials from the workshops presented below.

Dr. Wayne Rosenfield: The Elevator Pitch: Explaining Gaucher to Your New Provider

Dr. Stacey Feuer: The Zebra is Gray: Living and Thriving with Rare and Chronic Medical Illness

Aviva Rosenberg, JD: Selecting an Insurance Plan for your Family

Dr. Jim Cloyd and Rare Disease Theatrical Production 

Slides of Center for Orphan Drug Research presentation by Dr Jim Cloyd

Day 3 Medical and Research Presentations