Free Spina Bifida Book and Online Courses to Improve Support for Black and Hispanic New and Expectant Parents of Children with Down syndrome.
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Thanks to a generous grant from the Joseph P. Kennedy, Jr. Foundation, funding from the Spina Bifida Association, and donated photography from Redefining Spina Bifida, we are pleased to offer free Spina Bifida books for expectant parents first learning about a possible diagnosis. You can view the digital version or request one free copy here, or you can request up to 5 free copies for just the cost of Priority shipping here.
The books have been reviewed by representatives of the national medical, genetics, and patient advocacy organizations and cover the range of health issues and medical interventions, life outcomes, and available supports and services in English and Spanish. Please request your free copy today!
*We do limit quantities to 5 at a time since the books are being provided at no charge, and we want to make sure as many people as need them can access them.
Free Resources for Advocacy Organizations and Medical Professionals to Improve Support for Black and Hispanic Parents
Between 2022-2024, we held community conversations with Down syndrome Black and Hispanic parents of children with Down syndrome, advocacy leaders, health equity experts, and medical providers to get their input on helpful practices for medical providers and advocacy organizations to use when supporting new and expectant parents and sharing research-based information.
Now we have free online modules available for medical and genetics professionals to help improve their practice and capacity to support Black and Hispanic new and expectant parents. We also have white papers summarizing all the findings.
This online module can be completed at your own pace and includes the following features:
- online lessons
- instructional videos
- video podcasts featuring the voices of parents
- reflection activities
- links to many helpful resources
Read a summary about the project: Patient Centered Outcomes Research Project
“These resources were funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EADI-24186). The statements presented in these resources are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee
