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Who We Are

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

Our Process

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