- 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
- 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.
surveymonkey.com/r/H5QYQTG to complete the survey yourself or send out to survey families who might be interested. Please try to complete the survey as soon as you can, as the window is closing very soon.
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.