Advocacy
From WikiAdvocacy
One of the functions of advocacy organizations, advocacy is explained in this section.
Advocacy: Topics
- Getting 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
- Legislation and Policy Advocacy
Internal Links
Support
- Support for Individuals and Families
- Youth to Adult Transition Issues
- Conferences, Workshops, and Meetings for Affected Individuals
- Connecting Individuals
- Internet Services
- 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
Research
- Getting Needs onto the Research Agenda
- Educating Your Membership about Research
- Patient's Bill of Rights
- Genetic Privacy
- Promoting Research on a Condition
- Funding Research by Others
- Barriers to Rare Disease Research
- Consumers and Researchers: Making It Work
- Benefits of Collaboration with Advocacy Organization Community
- Facilitating Quality Research
- Research Models
- Blood and Tissue Banks
