Part II of the Genetic Alliance Interactive Guide

Education of Members, Providers, and the Public

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

Most groups 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. Any heritable condition may only be present with a particular environmental input. One of your organization's primary goals will be giving 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 the Genetic Alliance:

Genetics of Cavernous Angioma

Genetics of Tuberous sclerosis complex (TSC)

Facts about Genetics (and other articles)

» Starting Points for Planning Materials

Privacy Policy - Disclaimer - Funding
Maintained by the Genetic Alliance.
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups.

Send feedback about the Interactive Guide.

SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!

AN INTERACTIVE GUIDE TO BUILDING ADVOCACY GROUPS
Part II
Part I Part II Assessment Structure Resources Support Education Research Advocacy Part III	Education of Members, Providers, and the Public Lay advocacy groups share information with more than their members. Particularly now that the web makes sharing information so much easier, a lay advocacy group can become an important broker of information about its target condition. The size and goals of your group will determine how extensive your educational activities should be - for an exceptionally rare disorder, the library you develop may include peer-review journal articles for medical and scientific audiences and a single, simple brochure for all others. Most groups 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. Any heritable condition may only be present with a particular environmental input. One of your organization's primary goals will be giving 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 the Genetic Alliance: Genetics of Cavernous Angioma Genetics of Tuberous sclerosis complex (TSC) Facts about Genetics (and other articles) » Starting Points for Planning Materials Privacy Policy - Disclaimer - Funding Maintained by the Genetic Alliance. The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups. Send feedback about the Interactive Guide. SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!	« Autopsies and Tissue Collection » Starting Points for Planning Materials