Education of Members, Providers, and the Public

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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)

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