National Gaucher Foundation
2025 Impact Report
Our 2025 Impact: Community, Hope, and Support
The National Gaucher Foundation continues to change lives.
Over the past 40+ years, NGF has grown from a small number of families banding together to develop treatments for Gaucher disease to an organization with worldwide impact.
NGF has always worked to bring physicians, pharmaceutical companies, researchers, and families together in common purpose - supporting our community members with Gaucher disease - and in 2025, our results speak for themselves.
Our global community continues to grow, with the NGF Global Diagnostic and Treatment Initiative helping families across the world, while our digital tools and resources connect patients and their loved ones no matter where they are on their Gaucher journey.
We have so much to be proud of at the National Gaucher Foundation. I invite you to read our 2025 Impact Report, and here's to continued success and good health.
Brian Berman
CEO, National Gaucher Foundation
FROM THE DESK OF DR. ROBIN ELY
Going Global: NGF's Worldwide Growth
The National Gaucher Foundation Global Diagnostic and Treatment Initiative began in 2023 when, through a series of amazing synchronous events, I became connected with Dr. Uzima Chirwa, a pediatric hematologist in Lusaka, Zambia.
At that point, Dr. Chirwa had never seen a patient with Gaucher Disease. But just three days after we met, he texted me that - incredibly - he believed he had just seen his first Gaucher patient.
The lab where he had sent the patient's blood sample only picked up one GBA mutation, but it was very likely that this young girl had Gaucher disease. At that pivotal moment, we at NGF made the decision to offer our free diagnostic and treatment facilitation initiative worldwide - to anyone who needed it.
Our lab, Greenwood Genetics, found the second mutation, and from there, Dr. Chirwa, with our help, was able to secure free enzymes.
Since then, we have diagnosed 2 other children, and through referral to an adult hematologist also in Zambia, we have helped a young adult woman whose life has been transformed through our diagnostics and facilitation of treatment.
These initial interactions opened the door and patients across the world began reaching out through our website.
Over the past two years, I have attended conferences and met with physicians, researchers, and patients in London, Montreal, India, and Australia - expanding the reach and impact of our Global Diagnostic and Treatment Initiative.
Thankfully, I have been able to help patients in countries who do not have access to either ERT or SRT, or whose responses are not adequate - particularly with Gaucher Type 3 (the most prevalent type in India, Africa, and various parts of Asia).
The number of patients I am seeing globally increased significantly in 2025, and we hope to continue to grow this initiative through increased diagnosis, education of patients, families, and physicians who were previously not aware of Gaucher disease and its treatments.
Dr. Robin Ely
Founder, NGF
Director of the NGF Global Diagnostic Treatment Initiative
Dr. Ely's Worldwide Impact
Since the start of NGF's Global Diagnostic and Treatment Initiative, Dr. Ely has traveled the world - both physically and via Zoom - to meet with doctors, researchers, patients, and pharmaceutical companies to help diagnose and educate on Gaucher disease.
WORLDSymposium 2025 in San Diego
Dr. Ely presented the results of a survey on the use of cannabis products for the relief of symptoms not resolved by either ERT or SRT.
Read More
Monash University in Melbourne, Australia
Dr. Ely traveled to Melbourne, Australia, where she visited Monash University and Dr. Roger Zebaze.
Read More
Physicians, Sanofi Representatives in Turkey
Dr. Ely presented to more than 100 physicians in Turkey and the in-house team at Sanofi.
Read MorePatient Journeys
Each year, NGF continues to highlight members of our community - sharing their stories and their Gaucher journeys. Hover over each story to learn more.
"I'm so excited that I will be able to get my life back and hopefully go back to university and study again."
Read MoreTina Chimavu
"This disease is a part of us - but it doesn't define us. We are warriors."
Read MoreAdrianna Baker
"I want you to know that it seems scary at first, but some of the best doctors in the world are on your side."
Read MoreRivka Silver
Highlights from the NGF Facebook Group
The online community continues to grow with questions, answers, and plenty of support.
Join The Group
Digital Marketing Results
NGF's digital reach continues to grow across a number of channels.
NGF Staff
The National Gaucher Foundation has a dedicated staff who have lived and worked in the Gaucher community for years.
Brian Berman
President and CEO
Robin Ely, MD
Founder, NGF
Director of the NGF Global Diagnostic Treatment Initiative
Noreen Layne
Program Manager