Press Kits

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A press kit may be among the first educational materials you assemble after families are connected to each other. It's listed last here because it will contain examples of the other pieces your organization has developed and gathered.

A press kit is not a complete collection but rather a snapshot that accurately and rapidly communicates the mission, goals, and needs of your organization and its membership with the strongest, most evocative materials you can share. It may include:

  • A fact sheet about your organization, which may list achievements such as leadership publications or increases in appropriations traceable to organization efforts
  • A list of officially recognized (by your organization) spokespeople—lay and medical
  • Clips of newspaper articles or descriptions of television coverage
  • A biographical sketch of a representative affected individual and family, or of several to demonstrate a range of phenotypes or the natural history of a condition
  • A sample newsletter
  • An agenda for an event you created, and media coverage of that event
  • As always: complete contact information

A press kit is the show-and-tell version of your organization's resume, and a good press kit will do more than establish the image of your organization with media outlets. It will form a basic repository of materials that help you think about the history, functions, and plans of your organization.

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