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Share Your Advocacy Stories
Share your story to demonstrate the importance of advocacy from an individual, family member, or caregiver in a new advocacy toolkit.

Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families, or others living with the same condition. To date, we have collected over 240 resources that will help users build leadership, communications, outreach, and advocacy skills. The tools will be part of an accessible online toolkit, with advocacy resources grouped by topic area.

We would like to include a personal story that demonstrates the importance of advocacy from an individual, family member, or caregiver in each of the toolkit topic areas. For this project, 'advocacy' can include any example of a time when you or your family communicated a need, shared your story, or took steps to get something you wanted or needed.

Do you have a story to share about advocating in one of the following areas?
  • Youth Leadership
  • Transition to Adulthood
  • Insurance and Financial Assistance
  • Communicating about Your Health
  • Access to Health Care
  • Accessible Communities
To have your story included in the advocacy toolkit for individuals and families, please send a 1-3 paragraph summary to Sharon Romelczyk, Program Manager at Please only include information you wish to be shared, including any and all names or other identifying information. If we include your story on the toolkit, we will contact you to let you know your story has been selected.

Direct any questions about the stories, how they will be used for the toolkit, or the toolkit in general to

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The contents of this website were developed under grants from the U.S. Department of Education Project Grant H328M140021; Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services (HHS) Grant H84MC07994, Family to Family Health Information Center, $95,700 and Grant D70MC24124, Integrated Community Systems For CSHCN, $287,678); and approximately 5% financed with non-governmental resources. The contents should not be construed as the official position or policy of, nor should any endorsements be inferred by US Department of Education, HRSA, HHS or the Federal Government.