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’.


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”

Rare Disease in the News

Rare Disease is in the news! In Focus, a Spectrum News public affairs program, will feature North Carolina rare disease experts on Sunday, April 5, 2020 at 11:30 am. Loretta Boniti, host of In Focus, will interview Tara Britt about building rare disease coalitions and Parvathy Krishnan about patient advocacy. Additional program guests include medicalContinue reading “Rare Disease in the News”

Rare Disease Day 2020 at Syneos Health

The Rare Disease Innovations Institute was honored to participate in the 2nd Annual Rare Disease Day Symposium hosted by Syneos Health in Research Triangle Park. Attendees filled the conference room and heard presentations ranging from product development and funding to diagnostic and clinical challenges. Every topic focused on the great needs within the rare diseaseContinue reading “Rare Disease Day 2020 at Syneos Health”