FDA Public Meeting – Patient Perspectives on the Impact of Rare Diseases

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Registration Open: FDA Public Meeting – Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities

On Rare Disease Day, FDA announced the Agency will host a public meeting – “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities” on April 29, 2019. The purpose of the meeting is to obtain patients’ and caregivers’ perspectives on the impacts of rare diseases on daily life and to assess commonalities that may help the Agency and medical product developers further understand and advance the development of treatments for rare diseases. Patients and caregivers are strongly encouraged to participate either in-person or remotely.

Date: Monday, April 29th

Time: 1:00 pm – 5:00 pm ET

Location: FDA’s White Oak Campus, 10903 New Hampshire Avenue, Building 31 Conference Center, Room C, Silver Spring, MD

Registration: To register click here. Please register by April 15th

Unable to attend in-person? Submit comments to the docket, or join by webcast

Learn more:  visit the meeting page or view the Federal Register notice

Be sure to check out the latest FDA Voices post featuring Patient Affairs Staff Director, Andrea Furia-Helms, M.P.H. and Office of Orphan Products Development Director, Janet Maynard, M.D., M.H.S. The article discusses the progress we have made, highlights our continued patient engagement efforts, and describes how we advance, inform, and support medical product development for rare diseases.

To learn more about other ways that patients and caregivers can get involved at FDA, contact the Patient Affairs Staff (PAS), or check out our latest video – Patients Matter: Giving Patients A Seat at the Table. We’re also on Twitter @FDAPatientInfo.

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