Local Down Syndrome Organizations: Down Syndrome Prenatal Outreach Program

The Down Syndrome Prenatal Outreach Program was launched by Canister in 2008 and has been used by over 65 local Down syndrome organizations nationwide. The program is now part of the National Center for Prenatal and Postnatal Down Syndrome Resources and is available for any local Down syndrome organization to use.

The first purpose of the Down Syndrome Prenatal Outreach program is to raise awareness among medical professionals about available resources and support. This is best done by establishing relationships of trust between local Down syndrome organizations and medical providers; distributing material; doing presentations; and maintaining the professionalism of local organizations.

The Down Syndrome Prenatal Outreach program generally consists of a parent or staff contact for each OB/GYN group in the region. The Down Syndrome Representatives replicate the model of a pharmaceutical representative by visiting the OB/GYN offices quarterly to build the relationships, distribute materials, and update the stock of materials as needed. Further, the Down Syndrome Representatives offer business cards with contact information to the medical professionals and are available via telephone calls or in person.

Down Syndrome Representative training is offered to so that Down Syndrome Representatives understand the organization and focus of the Down Syndrome Prenatal Outreach program. The training also instructs parents and staff about how to act as representatives of local organizations.

To view the training course, please refer to the following:

Medical Outreach Training Presentation: MedicalOutreachTraining.pdf

Supplemental Materials:

Information sheet template for local organizations to gather data about prospective Down Syndrome Representatives: DSRepInfo.doc

Contact log for Down Syndrome Representatives to keep track of medical offices visited: contact-log.xls

Script for a Down Syndrome Representative approaching a medical office for the first time: Script.doc

Conduct Policy Template for a Down Syndrome Representative representing a local organization: ConductPolicy.doc

Introduction Letter Template from local organization to medical office: DSRepIntro.doc

Lunch and Learn Presentation about Down Syndrome for medical offices: OfficeOutreachPresentation.pdf

HIPAA Summary for best practices: HIPAA_summary.pdf

Other helpful resources:

New Prenatal Testing: Are You Ready?

Webinar How To Pass a Prenatal Testing Info Law in your State by DSAIA, NDSS, and MDSC

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