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Our Commitment to Ensuring and Enhancing Diversity, Equity, Inclusion and Justice - in our backyard and beyond

International SCN8A Alliance Diversity, Equity, Inclusion and Justice Statement

At the International SCN8A Alliance (8AAlliance), we value diverse, inclusive, and equitable opportunities for all those with SCN8A-related epilepsy/rare epilepsies and their families—whatever their gender, race, ethnicity, national origin, age, sexual orientation, economic status, location, identity, education or disability. Every person deserves to be listened to, respected, and have access to high-quality healthcare. We are committed to helping all families improve their understanding of epilepsy and build their health literacy in order to become more informed consumers of the healthcare system and become empowered to access the critical care their loved one needs and deserves.

We value diverse life experiences and work to ensure that all voices are valued and heard. While we are talking the talk we are also working to better walk the walk. We have relationships with organizations and groups that focus on providing services and communities to traditionally disenfranchised populations. We are in the process of surveying these communities to jointly build spaces that are more inclusive, open to and encouraging of a range of experiences, beliefs, practices and choices. We recognize that the intersectionality in these communities may compound the difficulties and roadblocks they may face.

Diversity, inclusion, equity, and justice are connected to our mission. We believe that it is critical that we—as a community—work to help minimize and eliminate health disparities and unjust policies that stand in the way of accessing quality, appropriate care and treatments.

The accountability falls on all of us to build a system that offers every person access to the right healthcare providers who will listen and work with caregivers to develop appropriate healthcare plans for our loved ones. Families who are already overwhelmed with caring for medically complex and fragile children should not have to face additional barriers to getting the appropriate care for their children.

We are proud to be working in partnership with a number of critical efforts to
ensure equity in the rare disease community.

The International SCN8A Alliance is a member of the Rare Disease Diversity Coalition (RDDC) – launched by the Black Women’s Health Imperative to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health, and diversity advocates, and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. This is critical work not only to ensure that we all have the same access to quality care and treatments but also  so we can leave no one undiagnosed who might benefit from understanding their diagnosis. Additionally, when we identify as many rare patients as possible—and ensure they are part of research and clinical trials for our communities—we build a better understanding the disease and can more effectively work towards effective treatments.

We are thrilled to partner with the incredible team at indousrare—Indo-US Organization for Rare Diseases—who are focused on accelerating therapies for rare diseases by building collaborative bridges between the US, the Indian subcontinent, and globally, to advance rare education, advocacy, & research. This partnership is based on the recognition that progress in the 21st century will require global cooperation and working with the  Indian subcontinent, which is home to roughly 23% of the world’s population, is key to the success of the rare community.