Rare Disease Innovations Institute

Our Mission

We are a catalyst to educate, engage and equip the rare disease community to achieve enhanced quality of life and accelerate diagnosis and enabling access to treatments. We initiate and coordinate alliances with public and private institutions to achieve a future where rare diseases are rapidly diagnosed, understood and treated.

RDII Overview

So how do we help our community? We do this by injecting patient voices at the heart of all initiatives. We have proven success ensuring successful launch of policy creation so all patients receive life saving therapies and enhanced quality of life.

By providing customized tool kits we are ensuring each state’s individual needs are addressed. NC RDII also provides training on the necessity of the patient voice in health policy, renewing evidence on the impact of disease on person and society, developing evidence-based advocacy strategies and identifying best practices on leveraing media. We also develop and implement clinical and patient rare disease education programs. By supporting access that would improve the quality of life, we find that is the best opportunity to inject the patient voice.

Built on the Foundation of Success:

North Carolina Rare Disease Advisory Council

3/25/15: Legislative breakfast to propose legislation to create NC Rare Disease Advisory Council hosted By Taylor’s Tale Foundation
4/14/15: Legislation filed in General Assembly, HB823
7/29/15: Legislation ratified by General Assembly
8/05/15: Billed signed into law
12/1/15: Appointments to council confirmed by NC DHHS Secretary
1/26/16: First NC Rare Disease Advisory Council meeting

Leadership Update

Rare Disease Innovations Institute, Inc. is pleased to announce the appointment of Ms. Susan Nichols as Chair of the Board for this non-profit.

Susan is currently CEO of Falcon Therapeutics. Susan has a proven executive management track record and over twenty years of corporate management and leadership experience in high growth biotech, entering the cell therapy arena in 2010. Susan brings a unique perspective having served in global executive management roles with early stage , emerging, and fortune 500 companies such as Invetech, Baebies, Thermo Fisher/ASI and Hitachi Chemical, She developed and oversaw partnerships with pharmaceutical companies and life science companies to advance drug development and the manufacturing platforms that enable commercial success. Susan was able to shepherd scale-up efforts of cell therapies through all phases of clinical trials and into commercialization. In support of early stage Life Science companies, she successfully established funding relationships with VC’s, Private Investment Groups, Angel Investors, Philanthropic Alliances, Non-traditional Financing, Royalty Deals, Licensing Opportunities, and Strategic Alliances.

“We are excited to work with Susan in this leadership role and are thrilled with the skill sets she brings,” stated Tara Britt, Founder and President of the non-profit.

In the News: Rare Disease Research in NC

Aired on Sunday, April 5, 2020 on Spectrum

Segment 1: Rare Disease Research in NC (Part One)

Segment 2: Rare Disease Research in NC (Part Two)

Segment 3: Rare Disease Research in NC (Part Three)