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’.


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

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 Experience for Champions acrossThe Pharma and BioTech Industries FEBRUARY 20th-21st, 2022 REGISTER HERE Nestled amongst the long-leaf pine trees in the Carolina Sandhills, Pinehurst No. 2Continue reading “A Two-Day Golf Experience for Champions for a Cure Tournament”

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 alignment legislation, implements a three-year timeline in which the screening must begin for new conditions added to the federal Recommended Uniform Screening Panel (or RUSP),Continue reading “North Carolina becomes 4th state in 2021 to sign newborn screening legilation”

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 and treatments for rare diseases. Keep reading in @dailyreflector: https://www.reflector.com/opinion/editorial_columnists/well-intended-measure-will-throttle-pharma-innovation/article_44f6722a-5cce-5c64-8c28-b19992f32b0d.html

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 Sickle Day. Our day will be full of Encouragement , Empowerment, Conversation, and Representation for everyone involved. We are so excited to be working withContinue reading “World Sickle Cell Day 2021”

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 join The Bonnell Foundation: Living with cystic fibrosis as we present: Manage stress and Promote self-care.We all need some tips on how to do this!We’reContinue reading “Manage Self Care – Webinar Registration”