Working with Family Advocates in Newborn Screening

Working with Family Advocates in Newborn Screening

Public Square #6Published September 20, 2017
The Prompt: 

On September 21, 2017, Baby's First Test hosted a webinar on how newborn screening programs can effectively collaborate with and support family advocates. During the webinar, Amy Gaviglio, MS, CGC from the Minnesota Department of Health discussed Minnesota's experience supporting family advocates, and Shanna Quimby shared her family's advocacy journey and her work through Gavin Flying for a Cure. You can watch the full webinar here.

After hearing Minnesota's and Shanna's experience working together, we want to hear from you! How can newborn screening programs collaborate and partner with families? What are the challenges that you've experienced? What have been the successes?

3 comments
The Question: 
How can newborn screening programs collaborate and partner with family advocates?
The Question: 
How can newborn screening programs collaborate and partner with family advocates?
Join the conversation. Share your thoughts.
FLAG
Adrianna Evans

Very excited to participate in the webinar!

FLAG
Natasha Bonhomme Project Director/ Co-Principal Investigator at Baby's First Test

Welcome everyone! I am Natasha Bonhomme, Director of Baby's First Test and am moderating this public square on the importance of partnership between NBS programs and family advocates. We are looking forward to hearing from you about what you have seen work and what what are some emerging opportunities when it comes to NBS programs and advocates working together. Even if you can’t participate in the September 21 webinar, please share your thoughts and ideas. We know there are many examples of how NBS programs and family advocacy groups have been able to work together and learn from each other to improve newborn screening. We want everyone to feel welcome to share their questions, stories, and ideas for stronger partnerships. We are looking forward to hearing from you.

FLAG
Pattie Browne

There needs to be more public awareness. Having OBDocs hand out a pamphlet in a congratulations kit is not enough, we need to talk about it, maybe start with high schools, PSA. Celebrity spokesman.

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