Research

Research must ultimately lead to health outcomes. This section describes models, tools and templates for research through the pipeline.

Research: Topics

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

Internal Links

Support

• Support for Individuals and Families
• Youth to Adult Transition Issues
• Conferences, Workshops, and Meetings for Affected Individuals
• Connecting Individuals
• Internet Services
  • Mailing Lists
  • Websites, Chat Rooms, and Newsgroups
• Phone Services
• Protecting Member Privacy
• Dealing with Death
• Autopsies and Tissue Collection

Education

• Education of Members, Providers, and the Public
• Starting Points for Planning Materials
• Newsletters and Bulletins
• Brochures and Fact Sheets
• Articles, Letters, and Other Media for Lay Publication
• Clinician- and Researcher-Focused Materials
• Press Kits
• Publisher Recommendations

Advocacy

• Getting Your Needs on Government and Legislative Agendas
• National Institutes of Health (NIH)
• Councils and Other Advisory Bodies
• Getting an ICD-9 code added for your condition