BTG - SYNGAP1 Family Meet Ups

SYNGAP1 - Awareness, Advocacy, Education & Research

Our SYNGAP1 Family Meet Ups Provide Empowering Experiences!

SYNGAP1 Parenting Meet Ups

  • Meet and Connect with other SYNGAP1 Families
  • Schedule an appointment and be seen by a SYNGAP1 Clinical Expert(s)
  • Learn about current SYNGAP1-related Research and opportunities to participate
  • Learn about resources for SYNGAP1 Patients and Families
  • Attend Educational Presentations provided by leading SYNGAP1 Clinical and Researcher Experts

BTG - SYNGAP1 Family Meet Ups provide a forum where SYNGAP1 patients, families and caregivers can connect with one another, gain knowledge about SYNGAP1-related healthcare, education, research and community resources, that will help them navigate their journey.

Our goal is to ensure all SYNGAP1 Community Members feel valued, empowered and connected.


SYNGAP1
ADVOCACY, AWARENESS & RESEARCH
Our SYNGAP1 Family Meet Ups are structured to maximize opportunities for SYNGAP1 Patients and Families to connect with other families, SYNGAP1 Clinical and Research Experts.

Bringing all the stakeholders together, provides a unique opportunity to share information about importance of patient advocacy and how patient and family participation in ongoing research is already accelerating the pathway to better treatments.

SYNGAP1 Family Meet Up Schedule Structure
*All SYNGAP1 Family Meet Ups are Scheduled in Coordination & Proximity with a SYNGAP1 Clinical Center of Excellence
DAY 1
  • Appointments with SYNGAP1 Clinical Experts/Researchers
  • Scheduled Activity Time to Meet with other SYNGAP1 Families
DAY 2
  • All Day Mini Conference *Child Care Provided
  • Presentations by
      SYNGAP1 Clinical Experts
      SYNGAP1 Researcher Experts
      

SYNGAP1 Family Meet Up
SYNGAP Center of Excellence
Kennedy Krieger Institute, John Hopkins School of Medicine
Baltimore, Maryland, USA
November 2019

SYNGAP1 Family Meet Up
SYNGAP Center of Excellence
Texas Children's Hospital, Baylor College of Medicine
Houston, Texas, USA
August 2019

SYNGAP1 Family Meet Up
The Patrick Wild Centre, University of Edinburgh
Edinburgh, Scotland, United Kingdom
June 2019

SYNGAP1 Family Meet Up
CHU Sainte-Justine Research Center, Universite de Montreal
Montreal, Quebec, Canada
2018

1st - SYNGAP1 Family Meet Up
SYNGAP Center of Excellence
Kennedy Krieger Institute, John Hopkins School of Medicine
Baltimore, Maryland, USA
2017