To raise Down syndrome awareness, get the information

With October being National Down Syndrome Awareness Month, here are two great opportunities to get the information to raise that awareness.

Next Monday, October 21, at 8 pm and again on Tuesday, October 22, at 11 am (all times EST), the National Center for Prenatal & Postnatal Down Syndrome Resources is offering a webinar for leaders of parent support organizations. From the webinar invitation, it will cover:

• The professional recommendations for how the new testing should be incorporated into clinical practice and what the sensitivity rate actually means;
• The new information available for supporting patients when they are offered testing and after they receive a test result; and
• Guidelines for meeting the needs of expectant parents, building positive relationships with medical providers, and creating a viable medical outreach program.

I will be presenting at this webinar along with Stephanie Meredith. Katie Stoll, a genetic counselor, will join us for Monday evening’s webinar and Blythe Crissman, a genetic counselor, is presenting with us at Tuesday morning’s webinar. More information and details on registering for the webinar can be found at this link.

Another offering throughout the month of October, is the ability to pre-order the new resources that will be discussed during the webinars. Lettercase has updated Understanding a Down Syndrome Diagnosis, the only booklet approved by the National Society for Genetics Counselors, recognized by the American College of Medical Genetics and Genomics, and created with the input from representatives of those organizations and the American Congress of Obstetricians & Gynecologists and the national Down syndrome organizations. The booklet is available for pre-order at just $7.

Additionally, Lettercase is offering a brand-new resource that fills an information gap in the administration of prenatal testing. Understanding Prenatal Screening and Testing for Chromosome Conditions is designed for patients who are being offered prenatal genetic screening. The pamphlet covers the genetic conditions NIPS is testing for and has the same high quality photography Lettercase’s materials are known for. When prenatal testing was recommended for all women, this pre-test information was identified as a gap area, one not addressed by the professional guidelines. Understanding Prenatal Screening fills that gap and is available for as low as $1.

Pre-orders of these new resources are being taken throughout October in honor of National Down Syndrome Awareness Month. You can pre-order your copies–and view some of the new images in these resources–by accessing this link.

Raise your own awareness this October by signing up for the webinar and provide information throughout the year by pre-ordering your copies of Understanding a Down Syndrome Diagnosis and Understanding Prenatal Screening.

Disclosure: I serve as the bioethics specialist for the National Center for Prenatal & Postnatal Down Syndrome Resources, which is offering the webinar and maintains the Lettercase materials. All statements made on this blog are in my personal capacity and should not be attributed to the National Center or any other organization I am affiliated with.