Uncategorized Letter from the President on the Prescription Drug Affordability Board 24 Jul 202326 Jul 2023 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)…
Uncategorized Women in Government- NBS webinar recording 14 Sep 2022 https://us06web.zoom.us/rec/play/VvgItPH5-MEAasN1CR_jCLVLpR4OHykfuyuf5_Hz1DujdbNIp7AzlAtpoJFYwdpV2vrhDOmGzSVM6mWC.VfPqdwaz0JUwWmGc
Uncategorized Seattle Rare Disease Fair & Summit 2022 20 Apr 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…
Uncategorized Rare Disease Day Virtual Event 2022 Recordings 11 Mar 2022 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…
Uncategorized Rare Disease Day Blog post from our President, Tara Britt 24 Feb 202225 Feb 2022 https://www.ultragenyx.com/blog/guest-post-rdii/
Uncategorized Rare Disease Day 2022 5 Feb 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…
Uncategorized 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…
Uncategorized North Carolina becomes 4th state in 2021 to sign newborn screening legilation 19 Nov 2021 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…
Uncategorized Well-intended measure will throttle pharma innovation 11 Oct 2021 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…
Uncategorized World Sickle Cell Day 2021 15 Jun 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…