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Inspiring words – Rare Disease Day, NIH
“Developing lexicons and glossaries to colloquialize science is important, but one thing that’s really important is to tear down paywalls.” – Luke Rosen (Actor, Patient advocate, Founder – KIF1A.org)
Qualiten Press team has compiled inspiring quotes from Annual Rare Disease Day event conducted by National Institutes of Health (NIH) to raise awareness and provide information about rare diseases. Check more in the video below!
Series: Advocacy – Multimedia
ABOUT RARE DISEASE DAY, NIH
On March 01, 2021, National Institutes of Health (NIH) conducted Annual Rare Disease Day event which was virtual (online), free, and open for the public . The event consisted of patients’ stories, scientific discussions, and various other informative sessions. It raised awareness and provided insights on current unmet needs, challenges, and potential solutions to improve research and discovery in rare diseases .
This year’s speakers included Senator Roger F. Wicker, Congressman G. K. Butterfield, Congressman Gus M. Bilirakis, NIH Director Dr. Francis S. Collins, NCATS Director Dr. Christopher P. Austin, Nobel Laureate Dr. Jennifer A. Doudna, and Dr. Anne R. Pariser among many other researchers, patients, family members and rare disease advocates.
Previously, in year 2017, Qualiten Press and Rare Is Special team has participated in Rare Disease Day event at NIH; and this year we attended the event virtually. Qualiten Press has created this video containing inspiring quotes from the event, which we hope would help people in raising awareness and understanding current needs in rare diseases area.
We would like to thank Senator Roger F. Wicker, Dr. Christopher P. Austin, Dr. Anne R. Pariser, Dr. Jennifer A. Doudna, Dr. Tracy Dixon-Salazar, Dr. Christopher U. Missling, Ms. Shazia Ahmad and Mr. Luke Rosen for their service and constant support to rare disease community.
Video recording of the Rare Disease Day – 2021 Event, NIH: https://videocast.nih.gov/watch=41259
Rare diseases community resources, NIH: https://ncats.nih.gov/engagement/rare-diseases-community-resources
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Authors of this content thank NCATS, NIH and the speakers for providing the permission to use their quotes for this video. Also, we thank all the scientists, physicians, advocacy groups, patients, families, and caregivers, inspired by whom this content is developed.
Video created by using licensed platform by Amir Hussain (MS) & Akhilesh Kumar (PhD, PPM)
This work was funded by the Qualiten Services LLC, USA.
Cite this Content: Hussain A, Maurya P, Kumar A. Inspiring words - Rare Disease Day, NIH. Qualiten Insight. 2021; ID:09007000007
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