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About Us Beyond the Bloodspot Summit

The 2017 Beyond the Bloodspot: Education and Engagement Summit was held on June 5-6, 2017 in Washington, DC. You can find the final agenda here.  Thank you to everyone who attended and participated at the summit. Your thoughtfulness, energy, and commitment to education helped create an engaging and generative meeting!

A full report on the summit will be available in August 2017.

Goals of the Summit:

  • Identify and evaluate best practices that improve family and healthcare provider understanding of the newborn screening system
  • Identify best practices that increase family and healthcare provider involvement in the newborn screening system
  • Evaluate family and health care provider involvement in the newborn screening system

Who Attended?

We had nearly 100 attendees at the Beyond the Bloodspot Summit! These attendees included families, representatives from 22 states, healthcare professionals, newborn screening and public health professionals from national organizations and programs, and experts in health communications and policy.

What Are People Saying?

This was – hands down – one of the best conferences that I have attended – breadth, depth, expertise.

“I hope there are more educational summits; I thought it was a great meeting and well organized/planned. Having other people there besides newborn screening (NBS) staff was educational for NBS people.”

“Great summit. Thought provoking, educational and enlightening.”

“[I have] more confidence in highlighting the importance of building up the education, training, engagement, and awareness efforts of the state program and therefore also prioritizing honing my skills in those activities."

“I greatly appreciated the opportunity to have education be the focus of the discussion and hear/talk with others."

“That was one of the best conferences/summits I’ve been to! You kept everyone fed and engaged and moving. I’m so glad I was a part of it!"

“It is heartwarming to see how seriously the Genetic Alliance takes the role of families.”

 “What I appreciated most was the mixture of people – the families were very powerful, and it was great to have them there alongside the state programs and clinicians”

“The Summit helped me see what other potential partnerships are out there."

“The agenda and Baby's First Test staff allowed for a lot of participant involvement/discussion and flexibility - not all didactic sessions”

“[Continue] to expand who is at the table for these discussions so that each program can have a voice, make progress, and be aware of efforts/ideas/activities... education always seems to take a back seat..."

“It was great to hear/learn about other resources, efforts, ideas...”

Our Summit's Story:

Photos From the Summit:

Registration for the Beyond the Bloodspot: Education and Engagment Summit is now closed. If you have questions, or if you would like to be added to the wait list, please email Jackie Seisman at

Created with flickr slideshow.

If you have questions about the summit or are interested in learning more, please contact Jackie Seisman at

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