Saturday, January 23-24, 2026
8:00am – noon (Memphis, USA = central time)
Conference is virtual and free of charge
SAMD9 and SAMD9L syndromes are recently discovered rare multisystem disorders that can affect the blood, immune system, brain, heart, lungs, hormones, digestion, bones, skin, and more. These syndromes were identified only in the last few years, so there is still much unknown. Even doctors and specialists are still learning about the range of symptoms, outcomes, and best treatments. Families affected by these rare diseases often feel isolated.
Join us for an informational session to learn the latest research and connect with other families. Hear from experts on:
- The range of symptoms and organ systems affected
- Genetics and inheritance patterns
- Monitoring and surveillance
- Emerging treatment approaches
There will be time for Q&A so you can ask questions directly to the experts. After the presentations, we will provide a safe space for patients in separate virtual rooms for SAMD9 and SAMD9L to connect with others, share experiences, and build community.
This conference is geared towards patients and families affected by these rare diseases. Come learn the latest and connect with others navigating SAMD9 and SAMD9L syndromes.