Functions of Advocacy Organization

An advocacy organization can have a variety of functions, from an informal network in which parents give each other moral support to a sophisticated formal organization, which uses media outlets, government agencies, legislative access, and research access to create a complete range of improvements for its target population.

The advocacy organization has functions in four major areas:

• Family: An advocacy organization almost always has family support at the center of its mission. First and foremost, these organizations are founded to speed information on its way to the people who use it, by creating a network for sharing. This may be clinical information or the peer support of being able to reassure a parent with a newly diagnosed child that she is not alone.
• Public: Advocacy organizations can provide a public face for a condition that may be poorly understood. Through careful use of media outlets and educational material, advocacy organizations can increase awareness of special needs, get "out there" to reach potential new members, and help enhance the quality of members' lives by relating their needs to other issues in the public eye.
• Providers/Researchers: Advocacy organizations can improve medical care by helping providers understand the day-to-day realities of a condition and the actual needs of affected families. They can serve as a central resource for the entire spectrum of the disorder and a referral center for specialists. They can also provide researchers with access to affected individuals and their families while providing a measure of protection for the participants.
• Government: Advocacy organizations can take a role in health care policy by helping members understand initiatives that are being proposed, proposing initiatives themselves, and mobilizing action where public comment is called for. They can also work with government agencies, such as Maternal and Child Health and the National Institutes of Health, to ensure that their members' needs are being served.

These functions can be grouped into four action areas:

• Support for individuals and families
• Education of organization members, professionals, and the public
• Research advocacy
• Legislative and policy advocacy

Topics

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

Research

• Getting Needs onto the Research Agenda
• Educating Your Membership about Research
• Patient's Bill of Rights
• Genetic Privacy
• Promoting Research on a Condition
• Planning a Research Conference
• 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
  • Research Model 1: Recessive Disorder
  • Research Model 2: Chromosomal Disorder
  • Research Model 3: Dominant Disorder
• Blood and Tissue Banks
  • Genetic Alliance BioBank
• Creating a Natural History Survey
• Drug Development

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
• Legislative and Policy Advocacy