Living with Sickle Cell

Comments on Practice Guidelines for SCD

Advocacy and Activism, Living with Sickle Cell /

The American Society of Hematology (ASH) is seeking comments on two additional draft clinical practice guidelines on sickle cell disease (SCD): pain and transplantation. All members of the public are invited to review the draft recommendations and submit comments, including physicians and researchers, allied professionals, industry and insurance company representatives, patients, caregivers, and general members

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SCD Cure through Stem Cell Transplant

Living with Sickle Cell, SC News and Research /

Exciting news!! Akshat Jain, MD, Director of Pediatric Hematology-Oncology at Loma Linda University Children’s Hospital and his team cures a Sickle Cell Disease patient through their first stem cell transplant. On behalf of Sickle Cell Warriors, a huge congratulations to Dr. Jain and his entire team! Click here to read the entire article.  

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Sickle Cell Phone Survey Opportunity for Patients and Caregivers!

Living with Sickle Cell /

This patient and caregiver survey seeks to understand the experience sickle cell patients have had with their disease as well as their interaction with the healthcare system.  By learning more about your journey or that of your child, we hope to help inform how companies can develop novel products that would better serve sickle cell

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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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