Brochures and Fact Sheets

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Brochures and fact sheets are typically an advocacy organization's first pieces to reach beyond organization membership. They also may be critical to disseminating accurate information about your condition—particularly if it is one that has been described on the basis of case studies of affected individuals with extreme symptom levels, rather than an understanding about the full range of the condition's expression.

A physician may be able to pass on your brochure to a family with a new diagnosis, or you may send them out upon being contacted by a new family. Your organization may use a brochure as a way to get to know someone in the community, such as a print-shop owner or caterer, who can help with in-kind donations to organization activities. Members may also use brochures and fact sheets with coworkers and neighbors—especially if you have a fundraising event on the calendar—to help them understand the condition and organization. Brochures and fact sheets form an important basis for any packet of information, whether targeted to families, providers, or media.

These materials should be planned carefully. Their length, the accessibility of their language, and the quantities you order are crucial issues that set apart useful materials from recycling material. An informational brochure introducing a family with a newly diagnosed child to the services available from your organization doesn't need to be twenty-five pages long. And for some conditions that affect extremely small numbers of people or have a very broad range of outcomes, the majority of printed materials may end up carrying very little clinical detail.

Informative pieces that create a way to relate to your organization's members and that show how you assist them are an important part of effective interaction with potential donors and with media contacts. Consider several issues when planning your materials:

Audiences: How many audiences do you need to reach? Spend some time creating a typical profile for each type of user. For example, parents, siblings, extended family, health professionals, ancillary providers, donors, journalists—even volunteers and the general public.

Messages: What is the "take-home message" you need to present in each piece? Samples could be "Parents have extra things to keep in mind, but with a little bit of planning and good communication with your children, their schools, and other parents, management will become just another regular part of the day." Or, "This condition is getting news coverage, and here are the reasons why it has implications for basic science, for privacy rights, or for accessibility to health insurance."

Scope: Promotional materials about an organization seeking donation should be short, designed for easy reading and a pleasing appearance, and should make the reader want to be involved. Background pieces for the media should suggest story ideas, give contact information, and point to reference resources. Materials for parents should give practical basic information, tips and other directions, and should give pointers for clinical and support contacts. Pieces for these three audiences may have no more than a few dozen words in common and may all range from a single page to a few pages of information. Be sure your focus is tight enough that you are getting the right information to the right audience.

Your brochure or fact sheet may be the first thing a potential member or donor sees about your organization. And effective brochure is informative, accurate, attractive, and easy to read. Whether you plan to print thousands of glossy pamphlets or to produce a simple black-and-white brochure at home, following a few basic steps will help make your brochure successful. To learn more helpful tips, download the newly revised how-to-guide on "Creating Effective Brochures: A Guide for Content and Presentation" from the Resource Repository.

Providing Accurate Information

Patients, parents, health providers, and the public and inundated by a constant flow of information from a myriad of sources, both reliable and unreliable. This bounty of ever-expanding information encourages opportunities to disseminate information further and more quickly online. Some information is credible, some is utterly false. The public needs a way to filter out the meaningless, harmful information so that everyone can access the high-quality health information that has the potential for positive impacts.

One of the main services advocacy organizations can offer through their print and electronic tools is this ability to provide quality and accurate information about a condition, as well as helping people sort through health information found from various other sources. Help ensure your organization's materials are of the highest standards by creating or updating them with the assistance of the developer's version of the Trust It or Trash It? tool.

On September 22, 2009, the Access to Credible Genetics Resources Network, a cooperative agreement funded by the Centers for Disease Control and Prevention, held a meeting to examine these issues in relation to the creation and assessment of health information. The proceedings of this meeting are available in a monograph entitled Trust It or Trash It? Creating & Accessing Genetic Health Information. Please read, distribute, and determine for yourself when to Trust It or Trash It.


Providing Multiple Translations

When trying to reach numerous cultural groups by introducing translations of a publication, a question that some organizations have is whether it is better to expand the selection to include a wide variety of languages or to keep a few translations frequently updated. Depending on the amount of resources you have (available finances and relationships with translation and printing services, etc.) a good rule is to keep the high demand languages as updated as possible. Additional translations can be produced and updated when the new information significantly changes the scope of the original copy. Adding additional languages should be of secondary concern and the decision to do so should be balanced against the need for those languages and the cost to produce them.


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