FDA Invites iCAN Community to Support Rare Disease Day

ATLANTA, GA, February 10th, 2021 - Join the U.S. Food and Drug Administration’s Virtual Public Meeting on Friday, March 5, 2021, from 9:00 a.m. to 4:00 p.m. to highlight strategies to support rare disease product development and in recognition of Rare Disease Day. Please visit the public meeting page if you are interested in more information and to register for the event, https://www.fda.gov/news-events/fda-meetings-conferences-and-workshops/public-meeting-fda-rare-disease-day-2021-03052021-03052021


Kicking off this wonderful event are iCAN Youth Members, Carl Johnson (and his mom, Pamela) from KIDS CT and Reece Baker from KIDS Kansas City. Both youth share insightful and impactful information about their conditions of Hereditary Angioedema (HAE) and Hodgkin's Lymphoma (HL) and why additional support is needed. Through sharing their voices, both youth members hope to bring further advancements in research leading to better medicine and treatments. As Reece shared, "It is amazing to see how good people are."





To learn more about other activities relevant to rare diseases and listen to stories, including our two amazing iCAN youth members, Carl and Reece, along with other terrific patient voices from the rare disease community and FDA staff working on rare diseases, please visit this webpage: https://www.fda.gov/industry/orphan-products-development-events/fda-rare-disease-day-2021


For additional ways in which youth may participate in iCAN or share their own stories, visit www.icanresearch.org or send an email to info@icanresearch.org today.


#iCAN #iCANMakeADifference #KIDS #RareDisease #FDA #ReeceBaker #CarlJohnson

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The International Children's Advisory Network Inc., (iCAN) is a tax exempt organization as described in Section 501(c)3 of the Internal Revenue Code