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 [cettprogram.org]
  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]
  
  
• Genetic Alliance [geneticalliance.org]

Posted: August 21, 2008