Preferences of information dissemination by parents and patients affected by DSD

November 30, 2016

Seeking patients with a difference of sexual differentiation and parents of children with a difference of sexual differentiation to take part in a research study! Participation in the survey is voluntary and you may decide at any point not to answer specific questions or submit the survey. I am a genetic counseling student at the… Read More

Access to Genetics Education and Services

September 9, 2016

Download Brochure Lori Williamson Dean, MS, CGC Assistant Professor and Chair Department of Genetic Counseling College of Health Professions and Program Manager Heartland Genetics Services Collaborative University of Arkansas for Medical Sciences Ms. Dean is a 1991 graduate of the Michigan Genetic Counseling Program who currently serves as the Department Chairman and Program Director for… Read More

NDDoH Screening for SCID

July 5, 2016

BISMARCK, N.D. – The North Dakota Department of Health (NDDoH) is pleased to announce that July 1 marked an important step in saving the lives of babies born in North Dakota. The state newborn screening program expanded their newborn screening panel to include a disorder called Severe Combined Immune Deficiency (SCID). SCID, also known as… Read More

Individualized Healthcare Plan Project

June 15, 2016

Heartland’s Individualized Healthcare Plan (IHP) Project is on its implementation phase!  We are looking for up to 20 participating schools/school nurses to attend the training for implementation on August 8-9, 2016 in Kansas City, MO.  Heartland will cover all travel-related expenses.  If you are interested in participating or have any questions regarding the training, please… Read More

NORD Webinar to Review Website and Resources

June 7, 2016

On behalf of the Heartland Advocate Work Group, I’d like to share the opportunity to join us next Friday, June 17th to participate on a webinar to review the National Organization for Rare Disorders (NORD) website and resources. Please share the information below with anyone who may be interested in participating. Thank you!

Care Coordination Exemplary Practices Report

April 20, 2016

Coordinating Care for Children with Genetic Disorders: Sharing Exemplary Practices from Primary Care and Specialty Care Providers report is now available! Please share the report (linked above) with your networks. The report is hosted on the NCC Care Coordination Workgroup Products page (here). On the landing page is the report itself as well as the… Read More

Let Your Voice Be Heard! Developing Models for Addressing Genetics Services in the United States Webinar

February 19, 2016

The Heartland Genetics Collaborative and the National Coordinating Center for the Regional Genetic Service Collaboratives (NCC) invites you to comment on proposed models for genetics services to address the current barriers and issues in the genetic service system. In the fall of 2015, two national surveys were conducted that asked providers and consumers to identify… Read More

Announcement: Small Project Awards!

February 17, 2016

Dear Heartland colleagues, We are pleased to announce another “rapid round” of small project awards.   We will fund 3 awards for up to $5,000 (direct costs) per award.  The work must be completed by May 31, 2016.  Please see instructions below. Provide a brief description of the project and a budget request.  Please submit the… Read More