National Genetics Education and Family Support Center

02/20/2024

The recording for our webinar, where we shared the results of our Family Leadership Survey, is now available! Click the link to learn what had to say about their experiences, journeys, and the responsibilities that come with the role: https://bit.ly/3I4uhci

02/01/2024

One week until this special Community Conversation!

Join us next Thursday, February 8, for a virtual discussion of strategies to raise awareness in your community on .

Register: https://bit.ly/3SzoLEW

02/01/2024

Proper specimen collection technique and timeliness in newborn screening are crucial to achieve the goals of early diagnosis and treatment of newborns with screened conditions to avoid disability, morbidity and mortality. To improve timeliness, healthcare providers should: Provide prenatal education...

01/30/2024

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

01/24/2024

Be sure to tune in tomorrow as we explore the insights we gained from our Family Leader Survey and learn more about how we can recognize, engage, and support as essential contributors in driving systems change within the genetics healthcare delivery system. Still need to register? Click here: https://bit.ly/47FEzdh

01/18/2024

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 as equal stakeholders in driving systems change within the genetics healthcare delivery system. Secure your spot today: https://bit.ly/47FEzdh

01/16/2024

Want to see a landmark or building lit up in Rare Disease Day colors on the rarest day of the year? 💙💜💚

Join the global effort to ! Learn how to honor your local rare disease community this way on February 29: https://bit.ly/3HLAhVt

01/10/2024

As we settle into the new year, we want to help you rediscover our award-winning Family Leadership Hub! Here, you can access the training and resources needed to enhance your abilities and empower your journey. Click here to learn more: https://bit.ly/3Ddscsi.

01/09/2024

is coming up on February 29, an especially rare day because of the leap year! 🦓💙💜

We feature stories from our community leading up to and on the day of the celebration. Share your story with us here: https://bit.ly/3G2HJuF

12/20/2023

As we prepare for the launch of the 2nd season of our 'Linked Together' podcast, we invite you to explore the first season, which showcases genuine discussions between amazing . Click here to view the videos today: https://bit.ly/3NzBqER

12/13/2023

Check out the highlights from our 2023 Family Leadership Workshop! Tune in as our inspiring family leaders open up about their unique genetics journeys, explore what family leadership means to them, and share what they need to be empowered and effective leaders engaged in systems change.

Click this link or the video below for a glimpse into what took place during this workshop: https://bit.ly/48hWdou

The National Genetics Education and Family Center (NGEFSC) hosted a Family Leadership Workshop in 2023. The aim of the Workshop was two-fold: to continue the...

12/12/2023

Diversity, research, genetic counseling