ReNU Syndrome United
A 501(c)(3) non-profit to unite patient and family advocacy efforts for RNU4-2, a highly prevalent neurodevelopmental disorder
Mission: Unite to build our ReNU syndrome community, raise awareness, and advance research
Vision: Empower families by providing resources, support, and hope for the future through pursuing the discovery of therapeutic treatment options
Values: Collaboration, Connection, Innovation, and Impact
BUILD COMMUNITY
Align & unite globally
Grow online communities
Facilitate virtual events
Create interactive map to encourage meet-ups & track global diagnoses
Plan inaugural conference
RAISE AWARENESS
Cultivate social media presence
Develop website
Unify Branding
Deploy awareness campaign
Distribute guides for families & clinicians
Disseminate testing information
ADVANCE RESEARCH
Encourage unified registries
Raise & allocate funding
Generate scientific interest
Foster relationships with researchers & pharmaceutical companies
Partner to create Centers of Excellence to bridge research & clinical care