Expecting Health

We are thrilled to share the release of our publication, "One Size Does Not Fit All: A Multifaceted Approach to Educate Families about Newborn Screening" in International Journal of Neonatal Screening. This paper highlights 3 of our multi-year education programs and focuses on the evaluation of our Navigate NBS social media campaign, in-person trainings, and digital modules. Congratulations to Marianna Raia, Vicki Hunting, Natasha Bonhomme and our project partners for this success. To learn more about incorporating these programs into your #newbornscreening efforts please reach out at Natasha Bonhomme. https://lnkd.in/dKia4xwR #raredisease #NeonatalScreening #PublicHealth

We are thrilled to announce this year's Newborn Screening Student Ambassadors. Twenty-one exceptional #GeneticCounseling students from 15 programs will join us for a month-long program to: - learn about the role of genetic counselors in public health, - connect with families and making change in the NBS system, - recognize emerging trends and discuss future opportunities. This group kicks off the week digging deeper into the multiple parts of newborn screening. It's so much more than a test. #PublicHealth #RareDisease #NewbornScreening Emma Duarte McKenzie Bell morgan Hurst Louise Limoges Samantha Betterman Staci Connolly Ana Eliza Bonilha Hope Wollen Emily Hefferle Karina Mancini CG(ASCP) Amanda Colton Madalyn Turner Andrea Verdes Emily Henderson Nirel Spivey, MPH Kathleen Rosales, MPH Casandra Vigil Leora Scheinerman Alyssa Griswold Emily Agen Paige Ekert

We wish you a happy International Women’s Day! In our work, we look to #InspireInclusion across communities so that everyone can lift up their voices and make positive change in their health journey. Today and every day, we celebrate all the women who are pushing for a better, inclusive tomorrow. #internationalwomensday

In celebration of International Women's Day on Friday, March 8th, we are hosting a virtual conversation with Irene Aninye of Society for Women's Health Research (SWHR) and Priscilla Rodriguez, MPH of EveryLife Foundation for Rare Diseases to share insights and perspectives on the importance of diversity and inclusion in health research and advocacy efforts. Click here to sign up today: https://bit.ly/4bVHuSr #internationalwomensday #womenempowerment #healthequity #inclusion

This month, we hosted a webinar that focused on the challenges the #BlackCommunity faces while navigating the #raredisease space and the healthcare system. Click this link to watch that recording now: https://bit.ly/4bIavkB #EWEFoundation #NOAACF #Links2Equity #TravereTherapeutics #rarediseaseweek #rarediseaseday

Mark your calendars to join us on February 14th at 1:00 PM EST for a meaningful discussion about the unique challenges Black individuals face when navigating the #raredisease space. Discover ways we can collaborate to improve these experiences. Secure your spot today using this link: bit.ly/4blrs4j The E.WE Foundation Travere Therapeutics #NOAACF #Links2Equity #healthequity #healthjustice

The Advisory Committee on Heritable Disorders in Newborns and Children voted Tuesday, January 30, 2024 to add #Krabbe to the RUSP. This recommendation will now go to the Secretary of HHS for approval. #newbornscreening #NBS #genetics

The results from our Family Leader Survey are in! Join us on Thursday, January 25th at 1:00 PM EST as we recap insights gained from the survey and discover how we can all genuinely acknowledge, engage, and support #familyleaders as equal stakeholders in driving systems change within the genetics healthcare delivery system. Secure your spot today: https://bit.ly/47FEzdh #familyleadership #changemakers #familyengagement

Embracing Dr. Martin Luther King, Jr’s legacy in our ongoing fight for health equity and justice for all. Together, we can build a future where quality and equitable healthcare is a right, not a privilege. #MLK #MLKJr #KingDay #MLKDay #healthequity #healthjustice

As we settle into the new year, we want to help you rediscover our award-winning Family Leadership Hub! Developed by our National Genetics Education and Family Support Center, this Hub provides a dedicated space where you can access the training and resources needed to enhance your abilities and empower your #familyleadership journey. Click here to learn more: https://bit.ly/3Ddscsi. #familyleaders #changemakers