SDS Registry Family Day in Boston, MA, US
Time & Location
About the Event
Registration is now closed. Hope to see many of you!
Celebrating the SDS Registry's 10th anniversary!
About this Event
Please join us for a complimentary day of education, connection, and fun!
- Hear updates from the SDS Registry
- Learn about exciting research
- Discover cutting-edge clinical trials for SDS
- Connect with other SDS families
Please individually register each family member attending this event by August 4th 2019 so we can plan for childcare and meals.
*Children's events will be available on-site*
Draft Event Program listed below.
8:30 AM – 9:30 AM – Registration & breakfast
9:30 AM – Welcome
10:00 AM – 11:45 AM – SDS Registry: Update, Talks and Discussion
11:45 AM – 12:45 PM - Lunch
12:45 PM – 3:00 PM – Talks and Discussion
3:00 PM – 3:15 PM – Break
3:15 PM – 5:00 PM – Family Event
Topics for presentation will include:
• Medical complications in children and adults
• Updates about bone Marrow transplant
• Gastrointestinal issues
• Strategies for leukemia surveillance
• Treatment of MDS and AML
• Gene therapy for SDS
• Living with SDS