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Stakeholder Engagement

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Genetic Alliance believes grassroots wisdom will drive biomedical research and healthcare services. Our values and solutions are based in a long and deep history working in and with people affected by rare and common diseases and conditions.

In our leadership in major domestic and international transformational efforts, Genetic Alliance creates and leads projects by first assessing need and later informing, developing, implementing, and measuring the engagement of stakeholders who will support an increase in knowledge and impact.

In more than three decades of supporting advocacy organizations and collaborating with clinical, policy, research, and other health institutions at the federal, state, and local levels, Genetic Alliance has cultivated a vast network. We believe the participation and leadership of diverse stakeholders is imperative for elevating voices; leveraging stories; identifying the most impactful research questions; informing successful participation and retention; generating insight for value assessment, quality product development, and effective project execution; and— ultimately—ensuring that knowledge makes its way back to people for better care.

We are committed to including people every step of the way by facilitating communication across multidisciplinary stakeholders. Using this approach, we customize the Genetic Alliance Engagement Framework, allowing for effective and meaningful involvement and increasing capacity for navigating engagement practices and using appropriate, tailored channels. We reinforce our approach to people-centered health research, services, and care by shaping dissemination strategies around the Best Practices in Effective Communication of Health Research.

Our Track Your Success Tool is designed to guide stakeholders, investigators, and other contributors through monitoring and quality improvement, aligning with each of the key engagement principles. Genetic Alliance leads advisory groups of stakeholders for studies and projects, including a group of parent, clinician, and health systems leaders for the PCORnet study on How Antibiotic Use Affects Childhood Obesity and Growth, supporting strong people-centered research and stakeholder-informed, relevant dissemination processes. Genetic Alliance also created Considerations for Community Stakeholder Compensation to help clarify and communicate fair compensation practices between community advocates and researchers.

At Genetic Alliance, we are resolute that people come first, and this value enables everything we do. In our Coordinating Center role for the Patient-Centered Outcomes Research Network (PCORnet), Genetic Alliance advocates for and promotes systems for community-informed research and speedy, appropriate dissemination. Our Consumer Task Force on Newborn Screening engages diverse stakeholder leaders around newborn screening policies, activities, and current events. The Patient-Focused Drug Development (PFDD) initiative supports the inclusion patient-focused input to create a more complete and relevant assessment of the benefit-risk balance of new treatments undergoing regulatory review by the FDA.

Disease advocacy is a multifaceted lay movement with decades of history. Thousands of organizations have evolved over time with similar objectives but a focus on different conditions. For more than three decades, Genetic Alliance has served as the go-to resource for organizations wishing to build on what has been accomplished before, share insights with others, and create a future focused on collaboration and mutual success—not reinventing the wheel. In accordance with these principles, we support growth and learning and facilitate collaboration across participant-led communities nationwide and across the globe, including the member networks of the PCORnet Coordinating Center. In a truly community-led effort to invite researchers to join individuals and families for robust discussion around the future of collaborative, people-centered research and the value of being trustworthy, Genetic Alliance hosted a PCORnet Trustworthiness Meeting in 2015, setting the stage for a new landscape in engagement. We also hosted a 2018 workshop entitled, People-Driven: Empowering Advocacy- and Community-Initiated Research, to identify critical needs to accomplish “the change we want to see in the world.”

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4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

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