Patient Advocacy and Support Resources
Individuals and families who are affected by rare and common inherited diseases are in need of reliable information about genetic and clinical information. Healthcare providers can offer patients and families the resources in this section for this information and for support through patient advocacy groups.
- CETT Program: Collaboration, Education and Test Translation Program [raredisease.info.nih.gov]
For patients affected by rare inherited diseases who are in need the reliable information that comes through quality genetic testing. The Collaboration, Education and Test Translation (CETT) Program helps bring new tests to patients while encouraging clinical laboratory and research collaborations, and supporting the electronic collection of genetic and clinical data in public databases to leverage the information into new research and new treatment possibilities.
- Evaluation of Genomic Applications in Practice and Prevention [egappreviews.org]
An initiative launched in 2004 to support a coordinated, systematic process for evaluating genetic tests and other genomic applications that are in transition from research to clinical and public health practice in the United States.
- Genetic Alliance [geneticalliance.org]
The world's leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
- Medical Home Portal [medicalhomeportal.org]
Reliable information and resources to help physicians and parents care for children and youth with special health care needs (CYSHCN).
Last Reviewed: December 15, 2011