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’.


Webinar Oct 22 11:00am est – The Patient Voice in Rare Disease Research

Webinar hosted by the Rare Disease Innovations Institute and IQVIA In rare disease research, patients and families are taking a seat at the table, providing real-life perspectives that are helping to shape the development of new therapies.  Sponsors, regulatory agencies, payers and health care providers alike are seeing the value of this increasing patient involvement.Continue reading “Webinar Oct 22 11:00am est – The Patient Voice in Rare Disease Research”

Founder & President, Tara J. Britt, Finalist in Rare Voice Awards

Thank you to the rare disease community for nominating these amazing advocates who give rare disease patients a voice on Capitol Hill and in state government. A special thanks to the members of the RareVoice Nominations Committee who performed the difficult task of selecting finalists in each category. The awardee for each category will be announced live at the RareVoice Awards takingContinue reading “Founder & President, Tara J. Britt, Finalist in Rare Voice Awards”

A RARE Patient Advocacy (un)Summit

Join us for a variety of engaging and educational online events, meet-ups, workshops and performances September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit. This two-week event will provide members of the rare disease community, stakeholders, and allies with opportunities to connect and engage with each other through interactive activities paired with educational programming. Continue reading “A RARE Patient Advocacy (un)Summit”

What are the opportunities and challenges for the regenerative medicine field as the world recovers from COVID-19?

We have all been inundated by webinars, podcasts and Zoom calls focused on identifying and navigating COVID-19 challenges. Based on what we have learned from the first five months of shelter-in-place and quarantine, what are the opportunities that can benefit our patient community as it pertains to clinical trials? This discussion focuses on the RareContinue reading “What are the opportunities and challenges for the regenerative medicine field as the world recovers from COVID-19?”

Tara J. Britt, President of RDII, Named in 11 Most Influential Women in Advanced Therapies

Celebrating women in advanced therapies… It’s important for our industry to inspire and attract female talent and to value the contribution of women in science if we’re going to achieve gender parity. It’s promising that we’ve seen women being awarded the Nobel Prize in Science, Chemistry and Medicine four times in the last six years.Continue reading “Tara J. Britt, President of RDII, Named in 11 Most Influential Women in Advanced Therapies”