Our Mission
RDII is a global non-profit focused on educating, engaging and equipping
the rare disease community. Through policy, tools and data we achieve a higher quality of life, accelerating diagnosis and enabling access and treatment
Our Vision
RDII has created a unique toolkit which will enable states create a Rare Disease Advisory Council (RDAC) is inclusive of best practices to ensure council is implemented timely and successfully. Success and sustainability are essential for a productive council. RDII will remain actively engaged with the state to ensure its productivity.
Who We Are
WE CREATE SUCCESS THROUGH POLICY, TOOLS AND DATA
RARE DISEASE – Improving the quality of life for the community through policy, enablement tools and data integration
POLICY – Advancing rare disease policies throughout the states nation and globally
TOOLKIT – Engage, equip, and educate all stakeholders
DATA – Prevalence, networks, newborn screening, and focus groups
Built on a Foundation of Success
NORTH CAROLINA RARE DISEASE ADVISORY COUNCIL
Areas of Impact
Rare Disease Advisory Councils (RDACS)
• State landscapes • Toolkit to ensure sustainability & success • Policy Input • Enablement tools
Rare Disease AdvisoARM Foundation -State Rare Disease Education Initative (STRiDE) – Rare Disease Education Forums (RDEF’s)ry Councils (RDACS)
• Cell & Gene Therapy Education • Market and Patient Access • Throughout the US
Rare Disease Codes: RDII leading federal effort for Rare Disease ICD codes
• Identify diseases • Prevalence • Connecting
Stakeholder Partnerships
• Uniting • Sharing • Building
Current Collaborations
• Patients • Caregivers • National Foundations • State Foundations • State and Federal Agencies • State and Federal Legislation • Industry • Academics • Clinicians Researchers