AJE, as a federal Family to Family Health Information Center, and Family Voices (the F2F Advocacy Organization), have partnered with Genetic Alliance on a Newborn Screening Family Education Program project. AJE is committed to supporting that project and making sure that DC families have their voices and needs reflected in this work.
The Genetic Alliance‘s purpose for the Newborn Screening Family Education Program project is to:
- Train and educate families on the definition, availability, and importance of newborn screening
- Increase partnerships between families, community organizations, and medical providers
- Increase knowledge, skills, abilities, and self-efficacy of families to serve as leaders on newborn screening systems-level advisory teams.
- Increase outreach and awareness of newborn screening in medically underserved groups
The target populations that Genetic Alliance/Family Voices are trying to reach are:
- Racially and culturally diverse families
- Expectant parents
- New parents (within 2 years of birth)
- Families affected by a condition detected by newborn screening (like sickle cell disease, cystic fibrosis, and many, many others)
Can you help us make sure that DC families have their needs reflected in the project? If you are willing to help us, please use this link, https://www.
The survey is only available in English, but the Genetic Alliance‘s protocol allows for families to complete the survey with assistance, including translation, or to complete it over the phone while someone with internet/computer access enters it online. A paper version is also available at our office.
The survey should take 15 to 20 minutes to complete and participants are entered to win a $75 gift card.
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