• Share

Research and Talks

A collection of research papers and presentations by Consortium members —

Fall foliage, Cambridge, MA

Neurocognitive clinical outcome assessments for inborn errors of metabolism and other rare conditions
Research paper by Elsa Shapiro, Jessica Bernstein, et al.
In the journal of Molecular Genetics and Metabolism
April 14, 2016

Public Workshop on Assessment of Neurocognitive Outcomes in Inborn Errors of Metabolism and Advancing the Development of Pediatric Therapeutics: Assessment of Neurocognitive Outcomes
Full meeting proceedings from workshop at FDA White Oak Campus in Silver Spring, MD
PDF of proceedings is here
April 16-17, 2015

Asbjørn Følling Memorial Lecture: Heroes of PKU–A History
Presented by Harvey L. Levy, MD
4th European Phenylketonuria Group Symposium: Advances and Challenges in PKU
European Society for Phenylketonuria and Allied Disorders
March 24, 2012, Rome, Italy

Neurocognitive Functioning in PKU
Presented by Susan Waisbren, PhD
High Hopes Inaugural Conference
Hosted by the National PKU Alliance
January 2010, Dallas, TX, USA

Social Emotional Development in PKU
Presented by Susan Waisbren, PhD
High Hopes Inaugural Conference
Hosted by the National PKU Alliance
January 2010, Dallas, TX, USA

Drawing Lessons from the History of Newborn Screening for PKU
Keynote speech by Diane Paul, PhD
Annual Meeting of the New England Consortium of Metabolic Programs
November 6, 2009, Boylston, MA, USA

PKU Teen Challenge 2009
Presentation by Tiffany Bowlby, MSW, LCSW
Annual Meeting of the New England Consortium of Metabolic Programs
November 6, 2009, Boylston, MA, USA

Learn more about Consortium membership
Learn more about our Annual Meeting

-- Previous Video Library