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March 22, 2019 Meeting

Agenda (PDF - 178 KB)

Meeting Minutes (PDF - 264 KB)

Webinar HRSA Exit Disclaimer

Transcript (PDF - 300 KB)

Presentations

Opening Remarks and Committee Correspondence (PDF - 155 KB)
Joseph Bocchini, MD
Committee Chair

Ad-Hoc Workgroup Update: Interpreting NBS Results (PDF - 44 KB)
Mei Baker, MD
Committee Member
Chair, Ad-Hoc Workgroup

RUSP Condition Nomination and Evidence Review Process: Summary of the Expert Advisory Panel Meeting (PDF - 283 KB)
Joseph Bocchini, MD
Committee Chair

Alex R. Kemper, MD, MPH, MS
Lead, Evidence-Based Reviews

Analyzing the Impact of Adding Conditions to the RUSP: Drafting an Approach (PDF - 250 KB)
Alex R. Kemper, MD, MPH, MS
Lead, Evidence-Based Reviews

Panel: Resources for Facilitating Rare Disease Research
James O’Leary, MBA (PDF 744 KB)
Strategist/Community Builder
Formerly Chief Innovation Officer, Genetic Alliance

Tiina Urv, PhD (PDF - 4.6 MB)
Program Director, Office of Rare Diseases Research
National Center for Advancing Translational Sciences
National Institutes of Health

Vanessa Boulanger, MSc (PDF - 1.6 MB)
Director of Research, National Organization for Rare Disorders

Date Last Reviewed:  June 2019