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IBEMC

IBEMC

Inborn Errors of Metabolism Collaborative Stakeholder Network

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    • Inborn Errors of Metabolism Collaborative
    • Improving Outcomes for Individuals with PKU
    • QUEST: IBEM with Uncertain Clinical Consequence
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Resources

PCORI-Research-Done-Differently

PCORI-Better-Research-Through-Engagement

PCORI Engagement-Rubric

Simon Sinek TED Talk

IBEMCSN PKU Governance Document

IBEMCSN QUEST Governance Document

PROMIS HealthMeasures

Patient Partner Webinar Series

MPHI.org NIH.gov NICHD.gov

This project was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3835-MPHI).

“This project was partially supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UH7MC30775, Midwest Genetics Network for $1,800,000 (0% financed with nongovernmental sources). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.”

This project was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (6611-MPHI).

The Inborn Errors of Metabolism Collaborative: Defining the Natural History of IBEM is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health Grant Number 5R01HD069039-02.

Website hotlinks and referrals to information resources do not constitute endorsement by the Inborn Errors of Metabolism Collaborative. This site is for informational purposes only and does not provide medical advice. ©2012 Inborn Errors of Metabolism Collaborative