SYNGAP1 Family Meet-Up –
Baltimore, Maryland Johns Hopkin’s – Kennedy Krieger Institute 801 North Broadway ~ 202 Conference Room
Dinner Reception: Friday, November 17, 2017 at 7:00 p.m.
SYNGAP1 Meet-Up: Saturday , November 18, 2017 8:30 a.m. – 4:00p.m & Sunday, November 19, 2017 8:30 a.m. – 2:00p.m.
Purpose: Meet other families affected by SYNGAP1 to discuss the challenges of living with affected SYNGAP1 individuals, manage new strategies and gain valuable information and support about SYNGAP1.
Welcome to our First SYNGAP1 Family Meet-Up – Baltimore. Our primary objectives is to empower the patient and stress the importance of their involvement in driving research. With this goal in mind, we believe that having all the stakeholders in conversation will communicate the importance of patient advocacy and their role in accelerating ongoing research and get to treatments faster.
Our goals are to provide support, education and resources. Foundation representatives will provide up to date research information and present current findings on data collected from the SYNGAP1 Registry and Natural History Study. This will also afford better communication and patient engagement in the ongoing research driven by the foundation registry charter. Clinicians and scientists will be presenting information on current research and be available to answer questions in an open forum. This will also give families an opportunity to ask questions and get clarification from the experts. The education the families will take away from the meeting is intended to reach treating clinicians of SYNGAP1 patients and give families and caregivers a secure knowledge base of the disease and how to best approach available treatments.