At Ring14 USA, we believe in partnerships and collaboration when common goals lead to effective and efficient synergies that rise the tide and lifts all boats. We are thankful to each partner and appreciate the work they do for the common good of their members.
The mission is to establish a Commission that is a patient-driven collaborative group of stakeholders to advance novel technologies to treat people with neurodevelopmental diseases with complex copy number variants/large chromosome anomalies. This commission was funded by a CZI Rare as One grant to Project 8p.
The mission of Rare Epilepsy Network (REN) is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.
The Epilepsy Leadership Council is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations.
Bringing together families and advocacy partners to help children with Developmental & Epileptic Encephalopathies (DEEs) live their best lives by sharing critical resources.
Our mission is to design and implement a system of co-production that will improve outcomes for people with epilepsy and their families/caregivers in the following specific ways:
- Improve quality of life
- Improve seizure control
- Improve seizure freedom
Co-production means that patients, families and health care professionals work together towards similar ends. Patients and families are part of the whole process.
Infantile Spasms Action Network (ISAN) is a collaborative network of 32 national and international entities focused on raising awareness for infantile spasms. Although awareness efforts are year-round, Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7.