Heartland Regional Genetics Network

02/10/2025

We are deeply saddened by the passing of Carol Kay Johnson. Carol was a remarkable force within HRGN, serving as a key member of the NBS Work Group since its beginning. Her dedication to the NBS program, both in Iowa and nationally, impacted countless lives.

Carol’s warmth, creativity, and compassion touched everyone around her. Her kind heart and passion will be profoundly missed. We extend our condolences to her family and friends and honor her incredible legacy.

For information on her life and service, please visit https://www.lensingfuneral.com/obituaries/Carol-Kay-Johnson?obId=35612570

12/12/2024

We have reached an important chapter in our story. While the grant that supported our services has ended, the relationships we’ve built do not. The bonds we’ve formed, the lessons we’ve learned, and the work we’ve accomplished together cannot be undone.

We invite you to watch our video, "What Heartland Means to Me," a heartfelt reminder of everything we’ve achieved as a community and that this isn’t goodbye, it’s "Until our paths cross again."

Our website and YouTube channel have been updated and will remain available in the foreseeable future, offering genetics-related resources.

Thank you for being a part of this incredible community. We encourage you to carry our spirit of inclusivity and remember, “There’s always room for one more.

Watch and share the video at https://youtu.be/lls8CAGm6vs.

While the grant that supported our services has ended, the relationships we’ve built do not. The bonds we’ve formed, the lessons we’ve learned, and the work ...

11/28/2024

This Thanksgiving, we extend our heartfelt gratitude to our vibrant community of professionals, families, and advocates across the Heartland.

We are thankful for your dedication and tireless efforts to enhance education, quality, and accessibility of genetics services. Your commitment plays an important role in helping families navigate their genetics-related journeys.

May this season bring joy to you and your families.

11/25/2024

Last weekend, we marked a bittersweet milestone with our final Marshallese Interpreter Training session in Chicago.

A heartfelt thank you to everyone who participated. It's comforting to know that a new group of advocates is passionately advancing the understanding of genetics and expanding healthcare access to those who need it.

Although this was our last event, the meaningful work will continue, driven by the dedication of our incredible supporters. Together, we keep the mission alive.

From the bottom of our hearts, kommol tata, aelop!

11/18/2024

The SERN Southeast Regional Genetics Network and the Genetic Metabolic Dietitians International partnered to develop the Nutrition Management Guidelines, Consumer Summary Sheets, and Consumer FAQs, in English and Spanish, which cover evaluating and managing patients known to have a particular metabolic condition.

Explore guidelines, toolkits, and more at https://managementguidelines.net/guidelines.php?utm_source=NCC&utm_campaign=63fb16118a-EMAIL_CAMPAIGN_2018_12_10_06_11_COPY_01&utm_medium=email&utm_term=0_b104d9288b-63fb16118a-508838901&mc_cid=63fb16118a&mc_eid=ccf80e6fd5.

11/10/2024

Nos complace anunciar nuestra serie de videos diseñados para responder sus preguntas sobre la herencia genética y los servicios genéticos clínicos.

Nuestro objetivo es apoyar el proceso de su familia brindándole el conocimiento necesario para tomar decisiones informadas sobre los servicios genéticos clínicos que conducirán a los mejores resultados para su familia.

Tenemos un código QR que lo lleva directamente a la lista de reproducción para que compartir estos videos sea más fácil.

Por favor ayúdenos a difundir la noticia compartiendo esta publicación y el código QR con familiares y amigos que puedan beneficiarse. Vea los videos ahora en https://qrco.de/be8il5.

11/07/2024

We’re excited to announce our video series designed to answer your genetics questions.

Our goal is to support your family's journey by providing you with the knowledge needed to make informed genetic decisions that will lead to the best outcomes for your loved ones.

We have a QR code that leads directly to the playlist to make sharing these videos easier.

Please help us spread the news by sharing this post and QR code with family and friends who may benefit. See the videos now at https://qrco.de/bdxgRQ.

11/02/2024

Earlier this year, the Mountain States Regional Genetics Network held a webinar, "Time 4 Genetics," that focused on newborn screening.

Dr. Dietrich Matern presented "60 Years of Newborn Screening in a Nutshell," which highlighted the history of newborn screening and outlined what the future of newborn screening could look like.

Watch the recording now at https://www.mountainstatesgenetics.org/t4g-nbs-webinar-recording/?utm_source=NCC&utm_campaign=63fb16118a-EMAIL_CAMPAIGN_2018_12_10_06_11_COPY_01&utm_medium=email&utm_term=0_b104d9288b-63fb16118a-508838901&mc_cid=63fb16118a&mc_eid=ccf80e6fd5.

10/25/2024

Visit the Heartland Regional Genetics Network Services page to learn what genetics services are, why a child might be referred to a genetics clinic, how to find a genetics provider in your area, and more.

This family-friendly page has information in English, Spanish, and Marshallese. Get started today at https://www.heartlandcollaborative.org/for-families/genetics-services/.

10/16/2024

A graduate student at the University of Arkansas for Medical Sciences (UAMS - Genetic Counseling) is conducting a study, “Utilization of the 2022 Pedigree Nomenclature Standards,” which will examine current pedigree nomenclature practices, and we need your expertise.

Eligibility Criteria:
*Must be 18 or older
*A current practicing genetic counselor
*Able to read English

This survey will take approximately 15 minutes and aims to better understand the utilization of the 2022 Pedigree Nomenclature Standards. Your insights are invaluable to us, and we invite you to contribute to this important field of study.

Join us in enhancing our understanding and practices by taking the survey today at https://redcapwap.archildrens.org/redcap/surveys/?s=PMTRRCRADE4E98CR.

Participants will have a chance to win one of two $25 Amazon gift cards!

Your participation could make a significant impact.

10/14/2024

We’re thrilled to announce that our genetics series videos, designed to answer the most common genetic questions from families, are now accessible in English, Spanish, and Marshallese.

We’ve created cards, highlighted in this post, with unique QR codes for each language intended for sharing with communities, advocates, families, and patients to empower them to make informed decisions for the best possible outcomes.

If you have questions or would like to request cards, please reach out to Cara via our contact page.

10/11/2024

Calling all Marshallese Interpreters!

Join us in Chicago, IL, November 15th-16th, 2024, for "Marshallese Interpreter Training in Genetics and Special Health Needs." This is an exceptional opportunity to enhance your skills and connect with fellow interpreters.

Seats are limited, so secure your spot today by registering at https://healthprofessions.uams.edu/programs/geneticcounseling/marshallese-interpreter-training/.

For questions and inquiries, please contact us through the Heartland Regional Genetics Network website.

The registration deadline is October 31st at 12pm CT.