Living with Sickle Cell

Webinar “What’s New at SCDAA”

Advocacy and Activism, Living with Sickle Cell, Resources /

SCDC Sickle Cell Data Collection program Register for Webinar “What’s New at SCDAA” Wednesday, April 24, 2019 10:00 AM – 11:30 PM PST Register now:  https://attendee.gotowebinar.com/register/1778776015181580301     Presented by Ms. Beverley Francis-Gibson, SCDAA President and CEO, and Dr. Biree Andemariam, SCDAA Chief Medical Officer. Tracking California’s Sickle Cell Data Collection for California program invites you to attend a webinar, “What’s New at the […]

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SCD Clinical Trials Network Workshops

Living with Sickle Cell /

ASH Research Collaborative Hosts SCD Community Engagement Workshops Join the ASH Research Collaborative for a series of fun and engaging Sickle Cell Disease Community Engagement Workshops this spring and summer, throughout the country for individuals living with sickle cell disease and their parents/guardians. The first workshop takes place April 13, 2019 in Chicago, IL! If

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

Advocacy and Activism, Living with Sickle Cell /

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

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ASGCT Patient Education on Blood Disorders

Living with Sickle Cell, Resources, Videos /

What is this? The American Society of Gene & Cell Therapy (ASGCT) is proud to announce the first release of the Society’s Patient Education program, a new initiative for 2019. The new patient-centered portal is designed by ASGCT committee volunteers in coordination with patient advocacy groups to educate and inform patients, families, and the general

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