Get to know us


The Edwards’ Syndrome Association is a community of families committed to advocacy, equal care, education, and rights of people with Edwards’ Syndrome and their families. We will empower parents to advocate while working to fill the gap in community needs by creating unfulfilled resources. We will do this by helping to shift public, medical, and community perceptions through partnerships and resource networks. 

Our Vision

At the Edwards’ Syndrome Association (ESA), we work to provide support and information to families and professionals impacted by Edwards’ Syndrome. Our primary aim is to become the central resource for those living with the diagnosis. We will provide access to up-to-date knowledge about the condition, available resources, and assistance programs.

Through our strategic partnerships, social media, website,  and medical events, we aspire to provide comprehensive information. Furthermore, we will provide support to help empower families and enable them to make more informed decisions about their caregiving. Our website offers a wealth of knowledge, such as helpful videos, and informational literature. All to help further the life expectancy and quality of life for children diagnosed with Edwards’ Syndrome.

Our vision includes inspiring families facing the diagnosis, educating the general population on the various ways Edwards’ Syndrome can manifest. We are creating a community for families where information is sharedin one location. Along with striving to empower medical professionals to provide fair and progressive care, and change the narrative in medical documentation. Essentially, it fosters a culture of growth, acceptance, understanding, and advocacy. We are committed to ensuring that every family impacted by Edwards’ Syndrome has access to the support and resources they need to thrive.

Our Values

The Edwards’ Syndrome Association (ESA) operates with a clear and distinct purpose: to empower families of those diagnosed with the syndrome. We believe in promoting hope and providing the necessary tools for families to advocate for their loved ones. Furthermore, we strive to facilitate effective communication between families and medical professionals. Through transparent and readily available information, we aim to guide families through the difficult journey of caring for a loved one with Edwards’ Syndrome.

Our organization is committed to offering knowledge and resources to families, thereby enabling them to make well-informed decisions for their children. As an inclusive organization, we provide support to all families who have been impacted by the syndrome, regardless of their background. We aim to foster a sense of unity within the community and work alongside medical professionals to create a supportive network.

At the ESA, we believe that clarity is key. We provide families with comprehensive resources to ensure that they have the information they need to make informed decisions. Our organization operates with professionalism and without bias, ensuring that we remain committed to our mission.