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Advocacy

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ad·vo·ca·cy /ˈadvəkəsē/ Noun. Support for or recommendation of a particular cause or policy.

Since its founding, Genetic Alliance has been the voice of advocacy in genetics. We empower others to make their voices heard. Advocacy in the 21st century, however, requires new definitions and new focus. We dissolve boundaries to foster dialogue that includes all stakeholders: from industry professionals, researchers, healthcare providers, and public policy leaders to individuals, families, and communities.

“Be the change you want to see in the world.” ~ attributed to Gandhi

Genetic Alliance supports individuals who advocate on behalf of themselves, their families, and others living with conditions and disorders. In all we do, we integrate individual, family, and community perspectives to improve health systems. We pledge to help individuals and families become empowered to turn obstacles into opportunities and take control of their own health decisions and health information. We can connect you to resources such as Advocacy ATLAS, which helps you make your voice heard, and Disease InfoSearch and Inspire, which help you find community with those who face similar challenges. 

Disease advocacy is a multifaceted patient movement many decades in the making. Thousands of organizations have evolved over time with similar objectives but a different condition focus. Simply put, your organization is a phenomenal resource. You provide support for individuals and families, educate clinicians, and advance research. Genetic Alliance is the go-to place for your organization to build on what has come before, share with others, and create a future where we are not all reinventing the wheel.

Science and technology never stop. The public must participate if policy is to keep pace with rapidly changing science. Principles, policies, governance, and regulation all have a role in biomedical research and services. When the Genetic Information Nondiscrimination Act of 2008 passed, we led the charge. When the demand for open access and data sharing began, we gathered our colleagues and joined academics in the movement. Today, we lead the consumer movement for many challenging issues around open access, newborn screening, reimbursement, biobanks, registries, clinical research, diagnostics, and therapy development.

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