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.