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’.


Rare Disease Day Virtual Event 2022 Recordings

MARCH 2, 2022 Use the links below to access the recordings DAY ONE DAY TWO Life with a rare disease can have infinite milestones, setbacks, traumas and triumphs—all likely to be interlaced with a variety of factors that can influence mental health and quality of life. In fact, psychological symptoms are estimated to affect 75%Continue reading “Rare Disease Day Virtual Event 2022 Recordings”

Rare Disease Day 2022

Collaborating to Make Mental Health in Rare Disease Stigma-Free Brought to you by: Jump to the Agenda for Each Day: Monday, February 28 | Tuesday, March 1  Register Now Syneos Health® Recognizes Rare Disease Day 2022 with a Series of Virtual Workshops Focused on the Intersection of Mental Health and Rare Disease  Life with a rare disease can haveContinue reading “Rare Disease Day 2022”

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”