2020 Virtual Newborn Screening Bootcamp

Please join us for education and engagement of newborn screening stakeholders. Expecting Health at Genetic Alliance and the EveryLife Foundation for Rare Diseases are again partnering to host the 2^nd Newborn Screening Bootcamp to provide resources to rare disease community stakeholders about the newborn screening system, facilitating pilot studies, building coalitions, navigating the RUSP nomination process, and preparing infrastructure to address challenges beyond the RUSP. 

The Bootcamp will occur as a multi-day event, occurring on Wednesdays from September 30^th until October 21^st for approximately two-hour sessions. Your registration today will cover all four events for the Bootcamp. While individuals are welcome to join individual events, we highly encourage everyone to attend all four events. 

September 30th, 1:00-3:00pm: An Introduction into Newborn Screening and the RUSP Nomination Process
October 7th, 1:00-3:00pm: Let's Talk Data
October 14th, 1:30-3:30pm: A Look Inside the ACHDNC
October 21st, 1:00-3:00pm: Challenges Within NBS and How to Work Together to Solve Them
 

Newborn Screening Virtual Bootcamp Agenda

September 30th: An Introduction into Newborn Screening and the RUSP Nomination Process
1:00pm-1:15pm: NBS: A System Not a Test Dr. Michele Puryear, Consultant, American College of Medical Genetics and Genomics
1:15pm-1:30pm: Patient Organization Guide to RUSP Nomination Ms. Terri Klein, President and CEO, National MPS Society
1:30pm-1:35pm: Break
1:35pm-2:35pm: Coalition Building Panel (Moderator: Natasha Bonhomme)
- Ms. Annie Kennedy, Chief of Policy and Advocacy, EveryLife Foundation for Rare Diseases
- Dr. Don Bailey, Distinguished Fellow, RTI International 
- Dr. Mary Schroth, Chief Medical Office, Cure SMA 
- Dr. Carolyn Jones, Director Public Policy and Government Affairs, Biogen
2:35pm-3:00pm: Networking Breakout Groups

October 7th: Let’s Talk Data
1:00pm-1:15pm: The Importance of Longitudinal Data in Newborn Screening Dr. KK Lam, Child Health Project Leader, CTSI Accelerator, Duke Clinical & Translational Science Institute
1:15pm-1:30pm: The Evidence Review Process Dr. Alex Kemper, Division Chief of Primary Care Pediatrics, Nationwide Children’s Hospital
1:30pm-1:45pm: Understanding Screening Methods Dr. Cynthia Powell, Chairperson, The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)
1:45pm-1:50pm: Break
1:50pm- 2:50pm: How to Launch & Run a Pilot Study (Moderator: Annie Kennedy)
- Dr. Michele Caggana, Director, Newborn Screening Program, New York State, Department of Health
- Dr. Joan Keutzer, Former Vice President and Head, Global Strategic Services, Rare Diseases, Sanofi Genzyme
- Dr. Amy Brower, Associate Project Director, Newborn Screening Translational Research Network, American College of Medical Genetics and Genomics
2:50pm-3:15pm: Networking Breakout Groups
    

October 14th: A Look Inside the ACHDNC
1:30pm-2:30pm: ACHDNC Review Process (Moderator: Natasha Bonhomme)
- Dr. Alex Kemper, Division Chief of Primary Care Pediatrics, Nationwide Children’s Hospital
- Dr. KK Lam, Child Health Project Leader, CTSI Accelerator, Duke Clinical & Translational Science Institute 
- Dr. Cynthia Powell, Chairperson, The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)
- Terri Klein, President and CEO, National MPS Society
2:30pm-2:35pm: Break
2:35pm-3:05pm: Where We’ve Been and Where We are Going: A Conversation Among ACHDNC Chairs (Moderator: - Natasha Bonhomme)
- Dr. Joseph Bocchini, Vice Chairman, Department of Pediatrics, Tulane University
- Dr. Cynthia Powell, Chairperson, The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)
3:05pm-3:35pm: Networking Breakout Groups

October 21st: Challenges Within NBS and How to Work Together to Solve Them
1:00pm-1:30 pm: Unique Challenges and Potential Collaboration between Public Health Labs and Patient Organizations
- Mr. Mark Dant, Chairman, EveryLife Foundation for Rare Diseases
1:30pm-2:00pm: Fireside Chat: Challenges Beyond the RUSP 
- Dr. Scott Shone, Director, North Carolina State Laboratory of Public Health, North Carolina Department of Health and Human Services 
- Natasha Bonhomme, Chief Strategy Officer, Genetic Alliance
2:00pm-3:00pm: Networking Breakout Groups
 

If you have any questions about the Bootcamp, please contact Dylan Simon, Newborn Screening Policy Fellow, at dsimon@everylifefoundation.org. 

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