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’.
Letter from the President on the Prescription Drug Affordability Board
Dear Members of the Colorado Prescription Drug Affordability Board, On behalf of Rare Disease Innovations Institute, Inc., I want to express my concern with the Prescription Drug Affordability Board (Board) into the prioritization of selection class criteria for affordability reviews pursuant to Senate Bill 21-175. I am afraid of the harm this bill could cause…
Seattle Rare Disease Fair & Summit 2022
We hope you can join us for the Seattle Rare Disease Fair Virtual Conference, 2022! What: The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research. Our goal is for all attendees to know how they can support accelerated research in rare diseases. We want to…
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%…
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 have…