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

The Common Voice of Rare Disease

The Rare Disease Innovations Institute is proud to bring you “The Common Voice of Rare Disease”, our blog which will share stories of vision, impact and success around rare disease, nationally and abroad. See below for our latest posts or ‘continue reading’.Continue reading “The Common Voice of Rare Disease”

A Two-Day Golf Experience for Champions for a Cure Tournament

18 Jan 202218 Jan 2022

A Two-Day Golf Experience for Champions for a Cure Tournament Join us at the legendary Pinehurst No. 2 Golf Course to support children with rare genetic diseases. A Two-Day Golf…

North Carolina becomes 4th state in 2021 to sign newborn screening legilation

The Governor of North Carolina has signed into law legislation that will help save the lives of nearly 700 babies born in the state each year. The law, referred to as RUSP…

Well-intended measure will throttle pharma innovation

More than one million North Carolinian patients are affected by a rare disease. Tara Britt, our founder, argues that removing IP protections from medical innovation will lead to less cures…

World Sickle Cell Day 2021

Topic Education for patients are their families with Sickle Cell Description Join RDII and Piedmont Health Services and Sickle Cell Agencies on Facebook live and YouTube as we Present World…

Manage Self Care – Webinar Registration

Topic Self - Care for Rare Disease parents #Rare #bonnellfoundation Description Let’s gather and unwind together. The pandemic has increased the stress families in the Rare Disease community are experiencing.Please…

Seattle Rare Disease Fair

SAVE THE DATE - Friday, June 4th and Saturday, June 5th, 2021 Join Born a Hero Research Foundation and Seattle Children’s Research Institute for this year’s virtual Seattle Rare Disease…

Phacilitate Webinar

THE EVOLUTION OF PATIENT VOICE AND ENGAGEMENT THROUGHOUT THE JOURNEY TO COMMERCIALISATION Date: 11th February 2021 Time: 4.00pm GMT | 11.00am EST | 8.00am PST HOW INDUSTRY, BIOTECHS AND PATIENTS CAN WORK…

Rare Disease Day 2021 at Syneos Health

7 Feb 20219 Feb 2021

Innovation in Rare Disease: Making Progress with Cell & Gene Therapies This Rare Disease Day, Syneos Health continues the drive to raise awareness of rare diseases and their impact on…

Rare Across America

24 Jan 202124 Jan 2021

WHENFebruary 22 - March 5, 2021 (Virtual Congressional meetings on March 3rd and 4th)WHATVirtual meetings with your Senators and Representative AND virtual advocacy events. Rare Disease Legislative Advocates (RDLA) organizes meetings…

Founder & President, Tara J. Britt, Finalist in Rare Voice Awards

12 Oct 202012 Oct 2020

Thank you to the rare disease community for nominating these amazing advocates who give rare disease patients a voice on Capitol Hill and in state government. A special thanks to the members of…