Become an International SCN8A Alliance
The International SCN8A Alliance was launched as a partnership between two patient and research-focused organizations, Wishes for Elliott and the Shay Emma Hammer Research Foundation, to facilitate coordination and collaboration across the growing global network of patient organizations focused on SCN8A.
We celebrate and want to help amplify the diversity of efforts to support the growing and diverse SCN8A population and recognize the importance of integrated data on our rare and still poorly understood disorder. We believe that if we all commit to ongoing communication and collaboration, we hold the best chance to minimize duplication and support each other in our shared effort to accelerate improved outcomes for all those living with SCN8A.
In the interest of advancing the understanding of and treatments for our loved ones with SCN8A as rapidly as possible, we look forward to working with you!
Benefits of Becoming an International SCN8A Alliance Partner
Partner in coordinated global efforts to accelerate research and improved care and outcomes for those with SCN8A
Participate in family network meetings with Dr. Hammer focused on advancing bidirectional learning about the complex genetics of SCN8A and family experiences
Be featured on The International SCN8A Alliance website as a partner (with links to your sites) with a list of the services you provide
Partner in SCN8A Unraveled educational series selecting topics and exploring translation
Participate in programming and priorities of
DEE-P Connections, providing broad resources to broad DEE community
We will promote partner programming/announcements on our website and social media channels
Get acknowledgement for collaboration on and gain access to International SCN8A Alliance developed resources (such as the Registry, Newly Diagnosed guide, forthcoming treatment guidelines, etc.) that we will help translate for distribution to your community
International SCN8A Alliance Partner Responsibilities
Participate in Quarterly partner Coordination meetings
Share information about and encourage participation in longitudinal International SCN8A Registry with your community
As relevant, promote activities and resources of the International SCN8A Alliance and share activities and resources you are developing with the global community
Regularly communicate updates in order to enhance coordination and reduce duplication
Always work in a collaborative way to advance the well-being and best interests of the SCN8A community and avoid duplication of efforts, in particular when it comes to data. We ask all partners to aid in sharing messages and updates about the 8-year longitudinal SCN8A Global Registry drives with their groups
Operate with respect for one another and the valuable work we all do to advance the well-being of those with SCN8A, their families and the data needed to find a cure