2023 Early Hearing Detection & Intervention Conference
March 5-7, 2023 • Cincinnati, OH
DUKE ENERGY CONVENTION CENTER
3/06/2023 | 2:00 PM - 2:30 PM | Meeting the Needs of Family Leaders Through Engagement, Education, and Support | DECC 211
Meeting the Needs of Family Leaders Through Engagement, Education, and Support
Born from Genetic Alliance, Expecting Health is a nonprofit organization rooted in 33 years of community programs and representing national voices and family-centered experiences. Expecting Health shares science-based and policy-informed information that reflects the lived experiences of individuals and their families.
In this session, we will share strategies used to engage and support families through two programs managed by Expecting Health (1) The National Genetics Education and Family Support Center and (2) The Newborn Screening Family Education Program. We will share how these programs aim to improve genetic services delivery, share specific resources and toolkits to develop family leaders, and discuss how these strategies to engage families can support the EHDI system of care.
The National Genetics Education and Family Support Center, in collaboration with family-led organizations, the National Coordinating Center, and Regional Genetics Networks, support individuals and families with genetic conditions to better engage with healthcare services. This session will focus on sharing strategies used by The Family Center to design and implement family engagement programs including: online family leadership training, community of practice forums as well as a workgroup focused on diversity and inclusion. Learn how these opportunities are designed to provide families with the knowledge, tools, and resources that they need to enhance their abilities to serve as leaders within the genetics healthcare delivery system.
The Newborn Screening Family Education Program is dedicated to developing opportunities for all families to learn about newborn screening and to develop training and educational resources that build confidence for families to become leaders in the newborn screening system. We will share strategies used to develop and implement the Navigate NBS Ambassador Program, a family leadership program designed to engage and support families in all areas of the newborn screening system.
- Identify the goals and objectives of The Family Center and The Newborn Screening Family Education Program
- Understand a multitiered strategy to engage families before, during and after newborn screening.
- Identify tools and resources available through the Family Center to enhance families’ abilities to serve as leaders within the genetics healthcare delivery system.
Presentation:
3420032_15604MariannaRaia.pdf
Handouts:
3420032_15604MariannaRaia_x.pdf
Transcripts:
3420032_15604MollyMartzke.docx
Presenters/Authors
Marianna Raia
(), Expecting Health, MRAIA@EXPECTINGHEALTH.ORG;
Marianna Raia is the Associate Director of Programs at Expecting Health and the program manager for the HRSA funded Newborn Screening Family Education Program. With nearly 15 years of experience as a genetic counselor working directly with families, providers, laboratories and advocacy groups in the rare disease community, Marianna is dedicated to helping patients, providers, and families understand how genetic information can empower you to make decisions about your health and the health of your family. She is committed to improving the experiences of families on their newborn screening and health care journeys.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with Expecting Health.
Nature: HRSA grant.
Nonfinancial -
No relevant nonfinancial relationship exists.
Molly Martzke
(), Expecting Health, mmartzke@expectinghealth.org;
Molly Martzke brings passion and real-life experience to her role with the National Genetics Education and Family Support Center where she serves as the Senior Program Manager. Molly has extensive experience working with diverse groups from local to international in providing family leadership training. She has dedicated her life’s work to improving the experiences and outcomes of all families with children with special healthcare needs. Molly is committed to actively engaging families as equal partners in their child’s health care and ensuring that the family voice is represented throughout the family’s journey and within their system of care. She believes that this change happens at the system level when there is diverse representation and honest dialogue amongst all parties.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.