Thank you to all that attended our 2024 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.
| 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, USA |
| 9:30-9:45 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) |