Getting Needs onto the Research Agenda

The most electrifying development in advocacy organizations for medical conditions is participating in, initiating, focusing and conducting research. Where organizations once met only to share tips and provide moral support, now they are lobbying Congress for increased appropriations, publishing standards of care for the conditions they support, and working directly with physicians and scientists to design, populate, and report on studies. With this shift, advocacy organizations have developed a powerful potential to make a significant, positive impact on knowledge about their members' conditions, the availability and efficacy of treatment, and corporate and government policies.

Internal Links

• Barriers to Rare Disease Research
• Benefits of Collaboration with Advocacy Organization Community
• Blood and Tissue Banks
  • Genetic Alliance BioBank
• Consumers and Researchers
• Educating Membership about Research
• Facilitating Quality Research
• Funding Research by Others
• Genetic Privacy
• Orphan Drug Application
• Patient's Bill of Rights
• Promoting Research
• Registries
• Research Models
  • Research Model 1: Recessive Disorder
  • Research Model 2: Chromosomal Disorder
  • Research Model 3: Dominant Disorder