05/10/2026
Over the last two days, we had the unique privilege of meeting and listening to 27 scientists, researchers, and specialists from 22 different Centers of Excellence and research laboratories across 10 countries—including Canada, China, Germany, India, Italy, Israel, Japan, Poland, the UK, and the US—as they discussed the latest findings and developments in SAMD9 and SAMD9L syndromes. Also, we were able to put some names to faces of other patients and patient families from around the world fighting these life-threatening diseases and discuss how we can help one another.
Since Kaden was diagnosed a little over a year ago, there have been 35 more patients diagnosed with SAMD9L syndrome. To newly diagnosed patients, their families, and those who find this page in the future—please know that you are not alone! The best of the best have joined forces and are working tirelessly making groundbreaking advances to combat this rare disease.
Christine and I are so grateful for Dr. Wlodarski and his team at the Wlodarski Lab who organized this symposium and is leading the charge against SAMD9L syndrome. And to the other research scientists, specialists, and their respected institutions across the globe that are contributing to this research for what is to date only 164 patients in the entire world.
— Justin Freeman
The Wlodarski laboratory investigates the genetic predisposition for bone marrow failure and myelodysplastic syndromes.
