Bringing the voice of SCN8A families to priorities in research, clinical care, policies, and funding

Amplifying the Voices
Of SCN8A Families

The International SCN8A Alliance works to inform, facilitate and empower SCN8A families to make our voices heard. Families know the challenges & uncertainties of our children’s condition & care better than anyone else. Let’s speak up, speak out, and advocate for improvements in our children’s quality of life and care.

Dialogue with SCN8A Researchers and Clinicians

The Alliance provides ongoing channels for families to provide regular informal and structured input to SCN8A clinicians and researchers – thru the SCN8A Research Consortium and the SCN8A Clinicians Network.

Informing Congress

A wide range of federal policies have a significant impact on the state of research on SCN8A and rare epilepsies, Medicaid and waiver coverage, public health policies, and drug development for rare diseases. to meet these needs we partnered to establish the bipartisan Congressional Epilepsy Caucus was launched in February 2023 for the House of Representatives and in February 2024 for the Senate with the aim of bringing together Members of Congress to raise awareness about the epilepsies and implement meaningful policies.

Industry

The Alliance actively partners with the two pharmaceutical companies developing SCN8A-targeted therapies for clinical trials. We provide ongoing opportunities to help families stay informed of progress and provide ongoing input and feedback on their questions, concerns, and priorities. We partner with multiple other pharmaceutical companies and BIO to continually bring the voice and priorities of our community to their attention.

Shaping strategies for Curing
The Epilepsies, 2021

The Alliance team has been an active participant in the major NINDS/AES effort to update national epilepsy research priorities and identify needed transformations to accelerate progress toward a cure for all epilepsies. We provide channels for family input and keep those perspectives front and center as follow up priorities and implementation of strategies are developed. We need measures that will produce early and measurable improvements in the quality of life of our children!

Finding your voice

We all know improvements are needed – the Alliance supports families to find ways to speak up and make their voices heard. Participation in SCN8A family regional and variant groups provide opportunities to establish ongoing exchange of information between families and other stakeholders. These channels help family voices being clear and effectively communicating family-centered priorities.

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