The Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success

We would like to take a brief break in our coverage of family health history to discuss a new resource for advocacy for individuals and families with special healthcare needs. Sharing information with family and healthcare providers can be one of the first steps in handling a diagnosis, but what about after?  Living with a condition might mean making some changes to your lifestyle, whether you are making these changes alone or together as a family. While change is never easy, this new toolkit will walk you through the process of becoming your own advocate, and provides resources for every step of the process.

The Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success was created by the collaborative efforts of Genetic AllianceParent to Parent USA (P2P), and Family Voices (FV). The Advocacy ATLAS is an online toolkit to help individuals and families easily access quality resources on advocacy skills and strategies.  The toolkit features over 240 tools and resources from vast combined networks of parents, parent advocacy groups, disease-specific advocacy groups, disability groups, and other partners.

The Advocacy ATLAS features resources and perspectives on youth leadership, transition to adulthood, insurance and financial assistance, communicating about your health, access to healthcare, and more. Resources are arranged into 10 topic areas, and each topic includes a personal story from an individual and/or family member on their experience with advocacy.

Advocating for yourself or another person with a genetic or other condition can be difficult, but The Advocacy ATLAS makes these resources accessible and relevant by organizing them in one place. It offers tools, strategies, and personal stories aimed at empowering individuals and families to improve their confidence and skills in advocating for what they want and need.

The Advocacy ATLAS will remain an ongoing project aimed at providing useful and relevant resources to people that need them most.  If you know of a resource that is not included in the toolkit, please send an email to All the resources used are carefully vetted by the development committee using standardized criteria to ensure quality and relevance for users. Visit to view the new tool and provide feedback.

We will resume with our family health history spotlight with coverage on collecting family health history for adoptive parents and individuals that were adopted.  Be on the look out for a special guest post form Penn Live reporter, Julie Dreese!