Increasing genetic knowledge through outreach.
Since 2013, the NHPCC has created informational materials to increase the knowledge among patients and providers on the role genetics play in bleeding disorders.
The Genetics Work Group has developed outreach strategies to genetic counselors outside the HTC network through national presentations and the Genetic Counselor survey, as well as the development of the Genetic Education Toolkit, one of the projects of national significance.
The Genetics Work Group also created two informational brochures for patients, available in both English and Spanish:
- Genetic Counseling for the Inherited Bleeding Disorders Community
Includes information on the role of genetic counselors in the comprehensive care team and how they can help patients better understand the inheritance of bleeding disorders. Download brochure in English or Spanish.
- Before and After Genetic Testing
Includes questions that patients may want to discuss with their provider before and after genetic testing. Download brochure in English.
A Genetic Education Toolkit was developed for female relatives at risk of carrier status. Because hemophilia is inherited through the X (female) chromosome, there is a need to identify women and girls who are at risk and offer genetic education services to promote optimal health for women, as well as help them understand their risk of carrier status and the risk for their future children. The toolkit includes a curriculum guide, PowerPoint presentations, journal articles, fact sheets to give to patients, and relatives and facilitator guidelines. This project was funded through the NHPCC as one of the four projects of national significance. A curriculum is available through ATHN. Project lead: Regina Butler, RN