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Monthly Newsletter
November 2016, Issue #36
Image result for fall leaves transparent clip art  Happy Thanksgiving! Image result for fall leaves transparent clip art
Happy Thanksgiving from all of us at Baby's First Test! This Thanksgiving, we are thankful for all of our partners and fellow newborn screening champions. Because of your hard work, every year more than 12,000 U.S. babies with serious but treatable conditions grow up healthy. Thank you!
Give the Gift of Family Health History
National Family Health History Day takes place on Thanksgiving Day, Thursday, November 24, 2016. Family health history is a record of the health and health conditions in your family. It also includes your family’s jobs, hobbies, habits, and more. Collecting this information and sharing it with your healthcare provider can help you better understand your own personal health risks and the steps you can take to stay healthy.

Give your family the gift of essential health history knowledge by ordering a free copy of the Genes in Life Family Health History toolkit!

To order a copy for a family member, click here.
To order multiple copies for an event, click here.
Resource of the Month
The Newborn Screening Public Square
The Newborn Screening (NBS) Public Square is an open space dedicated to conversations around newborn screening. The NBS Public Square is not just a forum – it’s a commitment to new ideas, knowledge sharing, and bringing together a range of communities and experiences within newborn screening to improve education and awareness. This month's public square focuses on assessing the ethical and social challenges in newborn screening research. Join the conversation! The public square will close December 22, 2016.
Join the Conversation
Thank you, NANN!
Baby's First Test Attended Annual NANN Conference
In late October, the Baby's First Test team attended the National Association of Neonatal Nurses's (NANN) Annual Educational Conference in Palm Springs, CA. During the conference, the team shared educational resources and materials with attendees and delivered a poster presentation on improving newborn screening education among neonatal nurses. Thank you to NANN for a great conference and to everyone who visited our booth!
Save the Date!
Beyond the Bloodspot Summit, Spring 2017

Baby's First Test will host a two-day education and engagement summit on newborn screening on April 26 - 27, 2017 in Washington, DC. Please check for updates. If you have questions about the 2017 Beyond the Bloodspot Summit, email Jackie Seisman at
Community Corner

Baby's First Test Hosted Twitter Chat with March of Dimes and Genetic Alliance
In honor of National Prematurity Awareness Month, Baby's First Test co-hosted a Twitter chat on Tuesday, November 15th with the March of Dimes and Genetic Alliance to discuss the risks of premature birth and the role genetics plays in pregnancy. Together, we reached over 130,000 people! If you were not able to make it to the chat, but are still interested in the topic, click here.

Genetic Alliance 30th Anniversary Conference & Celebration
Join Genetic Alliance on March 9-10, 2017 for its 30th Anniversary Conference and Celebration, an opportunity to celebrate the successes, examine the failures, and most importantly, plan for the future. Always keeping individuals and families at the center, Genetic Alliance will enable cross-disciplinary, multi-stakeholder teams to co-create a vision worth striving for as well as more concrete solutions to transforming health. Register and learn more here.

ACHDNC Accepting Nominations for Workgroups 
The Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) is calling for nominations for their Education and Training, Follow-up and Treatment, and Laboratory Standards and Procedures workgroups. Self-nominees are welcome. Nominations must be submitted by 11:59 PM, this Wednesday, November 23, 2016. For details, click here. For information on the Committee, click here.
Newborn News: Story of the Month
Would you want to know the secrets hidden in your baby's genes?
Source: NPR
Stay Connected

Internship Opportunities

Expecting Health Summer Intern
Genetic Alliance
Deadline: February 10, 2017
Stipend Available 
For more details, click here.
To apply, click here.

Upcoming Webinars

Baby's First Test: 5 Years of a National Educational Initiative

Baby's First Test
Tuesday, December 6, 2016 1:00 PM - 2:00 PM EST
To register, click here.

Quarterly CCHD Technical Assistance Webinar
Association of Public Health Laboratories (APHL)
Friday, December 9, 2016 1:00 PM - 2:00 PM EST
To join via phone: 866.740.1260, code 4852701
To login online, click here.

NBSTRN Virtual Repository for Dried Blood Spots (VRDBS) Demonstration
Newborn Screening Translational Research Network (NBSTRN)
Thursday, December 15, 2016 2:00 PM - 3:00 PM, EST
To register, click here.

SCID (Severe Combined Immunodeficiency) National Webinar
Association of Public Health Laboratories (APHL)
Monday, January 23, 2017 at 3:00 PM EST
To join webinar, first dial-In: 866.740.1260, code: 4852701
Then, login online here.

Upcoming Meetings

AUCD 2016 Conference

Association of University Centers on Disabilities (AUCD)
Sunday, December 4 - Wednesday, December 7
Washington, DC
For more information, click here.
November is Prematurity Awareness Month
Nurse Practitioner Week was November 13 – 19
HRSA Releases Zika Guide for States & Communities
Scholarly Article of the Month

Differences in Outcomes between Early and Late Diagnosis of Cystic Fibrosis

in the Newborn Screening Era

Read More
Funding Opportunities

National Coordinating Center for the Regional Genetics Networks
Deadline: Monday, December 12th
For more details, click here.

National Genetic Education and Family Support Center
Deadline: Tuesday, December 13, 2016
For more details, click here.

Regional Genetics Networks
Deadline: Wednesday, December 14, 2016
For more details, click here.

The MCH Adolescent and Young Adult Health Research Network
Deadline: Friday, January, 6, 2017
For more details, click here.

Innovative Therapies and Tools for Screenable Disorders in Newborns (R21) (R01) (R03)
Deadline: Thursday, September 7th, 2017
For more details, click here.

Natural History of Disorders Identifiable by Screening of Newborns (R01)
Deadline: Wednesday, May 8, 2019
For more details, click here
Thank you, Stacy!

In honor of last week's celebration of nurse practitioners, we want to thank Stacy Hines-Dowell, DNP, AGN-BC, for all of her hard work improving newborn screening education among neonatal nurses! Stacy is a nurse practitioner, co-chair of the Baby's First Test Steering Committee, and the creator of Connecting the Dots, an educational curriculum developed for nurses in the neonatal intensive care unit (NICU). To learn more about Connecting the Dots, click here.

The National Clearinghouse is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under Cooperative Agreement no. U36MC16509 (Quality Assessment of the Newborn Screening System. Total award amount: $2,900,000). 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. 

Copyright © 2016 Genetic Alliance, All rights reserved.
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