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Rare Disease Innovations Institute

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    • Our Team
    • Industry Partners
  • Resources
    • Patient Resources
  • RDACs
  • Events
  • Contact Us
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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

Recent Updates

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Women in Government- NBS webinar recording

14 Sep 2022
https://us06web.zoom.us/rec/play/VvgItPH5-MEAasN1CR_jCLVLpR4OHykfuyuf5_Hz1DujdbNIp7AzlAtpoJFYwdpV2vrhDOmGzSVM6mWC.VfPqdwaz0JUwWmGc
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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…
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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…
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Rare Disease Day Blog post from our President, Tara Britt

24 Feb 202225 Feb 2022
https://www.ultragenyx.com/blog/guest-post-rdii/
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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…
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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…
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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…
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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…
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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…
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Manage Self Care – Webinar Registration

10 Apr 2021
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…

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