Advocating with Compassion: Our Mission, Values, and Vision

Mission Statement

The Edwards’ Syndrome Association is a nonprofit community dedicated to advocacy, education, equal care, and the rights of individuals living with Edwards’ Syndrome and their families. We empower parents to become effective advocates and strive to address unmet community needs by creating essential resources and support networks. Through strategic partnerships and collaborative resource-building, we aim to transform public, medical, and community perceptions, fostering greater understanding and inclusivity for those affected by Edwards’ Syndrome.

Our Vision

At the Edwards’ Syndrome Association (ESA), we dedicate ourselves to supporting families and professionals affected by Edwards’ Syndrome (Trisomy 18) with compassion, understanding, and professionalism. Our mission is to serve as a central and trusted source, providing essential resources, current information, and access to supportive services and assistance programs.

Through meaningful partnerships, engaging social media platforms, our comprehensive website, and educational medical events, ESA ensures that families receive extensive support. Our carefully curated resources empower families to confidently make informed caregiving decisions. The ESA website features valuable materials, including educational videos and informative literature, aimed at enhancing both the quality of life and life expectancy for those diagnosed with Edwards’ Syndrome.

Our vision is to inspire, encourage, and uplift families as they navigate the complexities of Edwards’ Syndrome. We are committed to increasing awareness and understanding among the broader community regarding the varied ways this condition manifests. ESA fosters a connected community environment where families can readily access shared resources and information. Furthermore, we advocate for empowering medical professionals to deliver fair, progressive, and informed care while positively influencing medical documentation and practices. Ultimately, we strive to nurture a culture of acceptance, support, and advocacy, ensuring every family impacted by Edwards’ Syndrome has the tools and resources necessary to thrive.

Our Values

The Edwards’ Syndrome Association (ESA) is dedicated to empowering families impacted by Edwards’ Syndrome through compassionate support, education, and advocacy. We believe in nurturing hope, resilience, and strength by equipping families with the necessary tools and resources to advocate confidently for their loved ones. ESA emphasizes open and effective communication between families and medical professionals, facilitating better care and understanding through clear, accessible, and transparent information.

Our core values include:

  • Empathy and Compassion: We approach each family with deep understanding and genuine care.

  • Inclusivity: We warmly welcome and support all families, embracing diversity in all forms.

  • Collaboration: We actively engage and partner with medical professionals, families, and communities to build supportive networks.

  • Integrity: We uphold honesty, transparency, and ethical standards in all our actions.

  • Empowerment: We foster self-advocacy by providing comprehensive and reliable information.

ESA is committed to delivering valuable knowledge and resources, empowering families to make informed decisions about their children’s care. By fostering unity and collaboration within the community, we aim to ensure that every family impacted by Edwards’ Syndrome experiences solidarity, comprehensive support, and advocacy that genuinely makes a difference.