Thank you to all that attended our patient conference. It was a great success. We had over 230 people register for the conference and 27 countries represented. We appreciate all of our speakers for taking time out of their weekend to educate us all on SAMD9 & SAMD9L.
Saturday, January 27, 2024
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.
-
Part I: Clinical Education Forum Time Topic Speaker 8:00-8:15 am Welcome, Overview of SAMD9/9L disorders Dr. Marcin Wlodarski, Memphis, USA 8:15-8:30 am What do we know about genetics? Dr. Sushree Sahoo, Memphis, USA 8:30-8:45 am Focus on blood Dr. Miriam Erlacher, Freiburg, Germany 8:45-9:00 am Focus on immune system Dr. Eric Allenspach, Seattle, USA 9:00-9:15 am Break 9:15-9:30 am Focus on neurology in SAMD9L Dr. Marcin Wlodarski, Memphis, USA
Dr. Majd Khiami, Memphis, USA9:30-9:45 am Focus on hormones in SAMD9 Dr. John Achermann, London, UK 9:45-10:15 am Q&A Session with experts (Moderators: Jessica Uhrich and Andrea Kennedy) 10:15-10:25 am Patient stories (SAMD9L) Nathan Ehrlich, Pleasantville, New York 10:25-10:35 am Patient stories (SAMD9) Nancy Brettschneider RN BSN, Charlotte NC 10:35-11:00 am Break Part II: Transforming Care Through Patient-Partnered Advocacy 11:00-11:10 am Aplastic Anemia and MDS International Foundation Alice Houk, MPS, Senior Director of Patient and Professional Services, Bethesda, USA 11:10-11:20 am RUNX1-FPD advocacy group Monica Babich, Co-Founder and Co-Director 11:20-11:30 am Team Telomere Katie Stevens, Executive Director 11:30-12:00 pm Q&A Session with patient advocacy groups (Moderators: Jessica Uhrich and Andrea Kennedy) Part III: Coming Together: A Patient and Family Support Session (Patients only)
12:00-1:00 pm Individual break-out session for patients/families with SAMD9 disease
Individual break-out session for patients/families with SAMD9L disease
(two separate zoom links will be provided before conference)