Education of Members, Providers, and the Public

Advocacy organizations share information with more than their members. Particularly now that the web makes sharing information so much easier, an advocacy organization can become an important broker of information about its target condition. The size and goals of your organization will determine how extensive your educational activities should be. If it is an exceptionally rare condition, the library you develop may include peer-reviewed journal articles for medical and scientific audiences, and a single, simple brochure for all others.

Most organizations will have occasion to develop at least some of the following types of educational pieces:

• Newsletters and bulletins
• Brochures and fact sheets
• Events, such as conferences and workshops
• Clinician- and researcher-focused materials
• Articles, letters, and other media for lay publication
• Press-kit information for dissemination to media outlets

How Do You Explain Genetics to Your Membership?

Genetic conditions may be recessive, dominant, or polygenic. Some inherited conditions may only be present with a particular environmental input. One of your organization's primary goals will be povidiing as much information as possible about the causes and origins of the condition you support and its symptoms.

Here are some examples from groups that are members of Genetic Alliance:

Genetics of Cavernous Angioma

Genetics of Tuberous sclerosis complex (TSC)

Facts about Genetics (and other articles)

Internal Links

Support

• Support for Individuals and Families
• 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

• 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

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
  • Research Model 1: Recessive Disorder
  • Research Model 2: Chromosomal Disorder
  • Research Model 3: Dominant Disorder
• Blood and Tissue Banks
  • Genetic Alliance BioBank

Advocacy

• Getting Your Needs on Government and Legislative Agendas
• National Institutes of Health (NIH)
• Councils and Other Advisory Bodies