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Resources for Patients and Families

Consumer Advocacy Committee members bring consumer perspectives to the network's activities, facilitate consumer member's work within the network and provide educational programs for consumers about genetics, new technologies and legislative advocacy.

To find consumer support services in this region, contact one of these agencies in:

MSGRCC - Consumer Issues Committee Publications

Genetic Drift Issues

• Consumer Issues in Genetics - Vol. 18, Fall 2000 [Download PDF]

  • Introduction
  • Implications of Testing for Professionals
  • Difficulties in the Diagnosis of Genetic Disorders
  • Clergy Response to Genetic Issues in Counseling
  • Providing for Extended Care: The Montana Self-Sufficiency Trust
  • Patient Realities in Genetic Testing
  • Patient Perspective on Social Security
  • Systems Advocacy
  • Genetics and Managed Care
     
• Consumer Issues in Genetics Services - Vol. 8, Winter 1992
  • Genetic Support Groups
    • Parent Support Organizations for Genetic Disorders
    • The Importance to Physicians of Parent Support Groups for Rare Conditions
    • Using Parent Support Groups
    • Genetic Support Groups: Professional Viewpoint
    • Connecting With Support Groups: Suggestions for a Primary Physician
       
  • Parents Perspectives
    • The Professional/Parent Partnership
    • On Having a Child with a Common Genetic Disorder
    • Raising a Child with a Rare Disorder
       
  •  Barriers to Effective Genetics Services
    • Providing Genetic Information to Native Americans
    • Geographic Considerations in Genetics Services
    • The Financial Management of Genetic Services

Other Committee Publications

• "Have We Gotten Too Big For Our Genes?"  Advocacy in Genetics - A Teaching Guide and Workbook
   
• Learn About Genetic Services
  From 'What to Expect from a Genetic Evaluation' to 'Questions You May Have for Your Genetic Specialist', this area will help you understand the process of a medical genetics evaluation.

Internet Resources

• Your Genes, Your Health
  A Multimedia Guide to Genetic Disorders

• Genetic Alliance
  Genetic Alliance increases the capacity of genetic advocacy groups to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.