4th Annual PURA Syndrome Conference, Boston, USA

June 22 - 23, 2019

For the 4th year, the PURA Syndrome Foundation welcomed families of individuals diagnosed with PURA syndrome, medical and research professionals and other interested attendees from around the world.

Taking place in Boston, MA, at The Boston Marriott Quincy, this two-day conference offered current medical and research information, networking opportunities, and support to those interested in PURA syndrome. 

Saturday Sessions

Welcome Remarks

Overview of PURA Research Activities

Genetics of PURA Syndrome

PURA Syndrome Longitudinal Study

Why Use Model Systems for Research Part I & II

Why Use Model Systems for Research Part III & IV

Using Metabolomics to Understand Health and Disease

PURA Syndrome Foundation Review and Closing

PURA Foundation GRN Q&A

Sunday Sessions

Augmentative Communications

Caregiving and Relationships

Behavior Strategies for Children with Special Needs

Parent Panel Discussion

Closing Remarks