SCDAA Statement: CMS Cell and Gene Therapy Access Model
Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell...
SCDAA Statement: CMS Cell and Gene Therapy Access Model
SCDAA MARAC Statement: Pfizer’s Voxelotor (OXBRYTA®) Withdrawal
Mindful Mondays
Welcome back! Join us for a mindfulness exercise and start the week off right.
The Nod to “Naz” Traveling Exhibit
Discover the art and legacy of the late Hertz Nazaire.
SCDAA Statement: Know Your Rights in the ER
50 Years Forward
Join us as we look to the next 50 years of hope, awareness and progress.
SCDAA and MedicAlert Pilot Program
The Mental Health and Wellness Campaign
Learn the tools you need to manage your mental health as a sickle cell warrior.
Introducing: The SCD C.A.R.E.S. Consortium
SCDAA’s Clinical Trial Finder
Find a study near you with our new clinical trial finder.
Sickle Cell News
SCDAA names board officers
The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell...
MARAC Statement: Pfizer’s Voxelotor (Oxbryta®) Withdrawal
SCDAA Medical and Research Advisory Committee (MARAC) Statement: Pfizer’s Voxelotor (Oxbryta®) Withdrawal 9/27/24 What is the news? Pfizer announced the withdrawal...
Sickle Cell Awareness Month 2024
All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the...
CHW P.O.W.E.R Award
CLICK HERE TO LEARN MORE AND MAKE A NOMINATION Do you know a community health worker who exemplifies excellence and commitment...
MARAC Statement: Parvovirus B19, Fever and Urgent Care
MARAC Statement: Parvovirus B19, Fever and Urgent Care Aug. 13, 2024 – More infections with parvovirus B19, also known as “fifth...
WHO Publishes New Guidelines for SCD Management in Africa
The World Health Organization (WHO) recently published a comprehensive package of interventions for sickle cell disease management in Africa. The package...
SCDAA Statement: Know Your Rights in the ER
Know Your Rights in the Emergency Department – Biden Administration Releases New Guidance The Centers for Medicare & Medicaid Services (CMS)...
Statement on the Inclusion of DEI in Medical School Curriculum
SCDAA joins the National Medical Association, the American Medical Association, the American Association of Medical Colleges, and other groups, in advocating...
In Memory of Monica Rockwell
It is with great sadness that SCDAA shares the news of the passing of Monica Rockwell, executive director of SWGA Sickle...
SCDAA promotes Kevin Amado Jr.
The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell...
The Nod to “Naz” Exhibit
During our 50th Annual National Convention in 2023, SCDAA was proud to exhibit the artwork of Hertz Nazaire at a pop-up...
CMO Speaks: Cyberattacks on Health Care Companies
Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This article was written by Dr. Lewis...
SCDAA Joins the IGT Patient Advocacy Advisory Council
SCDAA is pleased to announce that we have joined the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council. IGT advocates...
15K in a Day for Rare Disease Day 2024
HELP US REACH OUR GOAL – DONATE TODAY Did you know that February 29 is Rare Disease Day? This important event...
CMMI Announces the Cell and Gene Therapy Access Model
Today, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model,...
Sickle Cell Disease is Not a Joke
This weekend’s Saturday Night Live skit about the recent historic approvals of potentially curative gene therapies for sickle cell disease is...
Gene Therapy: What You Need to Know (Warrior FAQs)
Download a Printable Brochure | Download a Printable Statement Two gene therapies were approved in Dec. 2023 by the Food and...
SCDAA Statement About Gene Therapy Approval
On Dec. 8, 2023, the Food and Drug Administration (FDA) approved two cell-based gene therapies for sickle cell disease (SCD), Casgevy...
Gene Therapy is Approved!
We are very excited to share that today, Dec. 8, the Food and Drug Administration approved two gene therapies to treat...
SCDAA Statement on Exa-cel Gene Therapy
On October 31, 2023, the Food and Drug Administration is poised to make a landmark decision about exagamglogene autotemcel (exa-cel) gene...
CDC SCD Pregnancy Fact Sheets
Learn more about how to stay healthy leading up to, during and after a pregnancy with these newly developed fact sheets...
In Memory of Dr. Lennette Benjamin
The Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news of the passing of Dr. Lennette...
CMO Speaks: Making ED Care Better for SCD – Progress in 2023
Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This article was written by Dr. Lewis...
New Opiate Dosing Calculator for Health Care Providers
NEW RESOURCE AVAILABLE: This tool from the National Alliance of Sickle Cell Centers can help sickle cell providers make important decisions...
CMO Speaks: Gene Therapy for SCD (Part 2)
Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This is part two of a three-part...
MARAC Statement: Health Insurance Coverage for MSD SCT
MARAC Statement: Health Insurance Coverage for Hematopoietic Stem Cell Transplant for Sickle Cell Disease from HLA-matched Sibling Donor (MSD HCT) Sept....
MARAC Statement: Update About COVID
Sept. 16, 2023 – The worldwide pandemic of COVID-19 (SARS-CoV2) infections seem to have settled down, and we are now seeing...
SCDAA and MedicAlert Foundation Launch Pilot Program
Leading Sickle Cell Organization and MedicAlert Foundation Launch Pilot Program to Improve Emergency Care During Sickle Cell Pain Crises Non-profits partner to...
Sickle Cell Awareness Month 2023 Events
All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the...
Abstracts Accepted Until 11:59 p.m. PST
This morning, we were notified that some users experienced issues using our 2023 National Abstract Competition portal. This issue has been...
MARAC Statement: Crizanlizumab (Adakveo)
July 7, 2023 – SCDAA’s Medical and Research Advisory Committee (MARAC) notes that the European Medicines Agency’s (EMA) Committee for Medicinal...
SCDAA Teams with MedicAlert Foundation
Sickle Cell Disease Association of America Teams with MedicAlert Foundation to Improve Emergency Outcomes During Sickle Cell Crises Nonprofits partner to...
Afimmune joins the SCD C.A.R.E.S. Consortium
Dublin, Ireland, 19 June 2023: Afimmune, a clinical stage biopharmaceutical company developing novel rare disease therapeutics, today announced it has been invited to...
CMO Speaks: Gene Therapy for SCD (Part 1)
CMO Speaks is a blog featuring the voices of SCDAA’s clinical leadership team. Part 1 of our Gene Therapy series was...
SCDAA Announces FY24 Legislative Priorities
Did you know that the federal government is poised to make some of the biggest decisions in sickle cell history right...
June 19, 2023, is Officially Sickle Cell Awareness Day in Maryland!
Maryland Governor Wes Moore has signed a proclamation to make June 19, 2023, Sickle Cell Awareness Day! This recognition goes a...
SCDAA hires member coordinator
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell disease,...
Women’s History Month: Dr. Marilyn Hughes Gaston
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Marilyn...
SCDAA names new board members
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, named...
Women’s History Month: Dr. Yvette Francis-McBarnette
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Yvette...
Women’s History Month: Dr. Helen M. Ranney
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Helen...
SCDAA to promote clinical trials
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, formed...
Women’s History Month: Dr. Angella Dorothea Ferguson
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Angella...
#BlackHistoryMonthHeroes: Carlton Haywood Jr.
SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month...
#BlackHistoryMonthHeroes: Dr. Kwaku Ohene-Frempong
SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month...
#BlackHistoryMonthHeroes: Hertz Nazaire
SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month...
MARAC Statement: Penicillin Shortage
Penicillin VK solution is suffering from intermittent supply shortages. This can affect children with sickle cell disease. Penicillin VK in liquid...
Sickle Cell is Not a Joke
The Sickle Cell Disease Association of America, Inc., joins the Foundation For Sickle Cell Disease Research (FSCDR) in condemning the use...
CMO Speaks: Fertility Care and SCD
CMO Speaks is a blog featuring the voices of SCDAA’s clinical leadership team. The below article was written by Dr. Lewis...
MARAC Statement on Influenza
December 6, 2022 — The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) shares the following:...
Midterm Election Outcomes and What they Mean for SCD
An update from John Otsuki, SCDAA government relations manager As I am sure you’re aware, the United States recently completed a...
NFL players spotlight Sickle Cell Disease Association of America
The NFL’s My Cause My Cleats campaign features players showcasing important causes on their cleats each year during Week 13 games...
MARAC Encourages Clinical Research Studies
The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) believes that progress in sickle cell disease...
Frequently Asked Questions about SCT in Newborn Screening
Many people have questions about sickle cell trait after newborn screening. Dr. Lewis Hsu, SCDAA chief medical officer, answers some of...
New Publications Emphasize Inequities in Pediatric SCD Care
This week, two new publications call attention to the barriers to care children with SCD face. Prioritizing Sickle Cell Disease, an article co-authored...
MARAC Advisory Statement: Immunizations
August is National Immunization Awareness Month. What does that mean for individuals with sickle cell disease (SCD)? The Big Picture from...
Tools for Sickle Cell Awareness Month You Don’t Want to Miss
September is Sickle Cell Awareness Month. Check out these helpful tools and learn more about how to support sickle cell warriors!...
Member Organization Sickle Cell Awareness Month Events 2022
Join an SCDAA member organization at one of these great events this September! The Amazing Race 5K/1K | Starts September 1 |...
Urge Officials to Cosponsor the SCD Comprehensive Care Act
Dear Sickle Cell Community, Over the past several months, SCDAA has been working with congressional sickle cell disease (SCD) champions and...
The Passing of Dr. Samir Ballas
SCDAA regrets to announce that Dr. Samir Ballas passed away on August 12. He was devoted to caring for adults with...
MARAC Advisory Statement: Monkeypox
July 20 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the news...
Memorial Service for Dr. Kwaku Ohene-Frempong
Dr. Kwaku Ohene-Frempong, a visionary sickle cell doctor and advocate, passed away on May 7, 2022, at 76. A memorial service...
Sickle Cell Care Expansion Act Introduced to the Senate
Ahead of World Sickle Cell Awareness Day on June 19, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.) introduced...
SCDAA Joins the Newly Formed Sickle Cell Disease Partnership
Partnership Calls on Policymakers to Implement Proposals in 2020 Landmark Report Today, in recognition of World Sickle Cell Day on June...
SCDAA names chief financial officer
The Sickle Cell Disease Association of America named Reginald Hart Jr. as chief financial officer. Hart brings more than 20 years...
SCDAA Releases Comments on the CDC’s Opioid Guidelines
The Centers for Disease Control and Prevention (CDC) recently drafted an update to its guidelines for prescribing opioids and reached out...
In Memory of Dr. Kwaku Ohene-Frempong
We are devastated to learn of the death of Dr. Kwaku Ohene-Frempong on Saturday, May 7, 2022. Dr. Ohene-Frempong was a...
SCDAA recognized for leadership
The Sickle Cell Disease Association of America received the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders....
MARAC Advisory: COVID-19 and Sickle Cell Disease
March 2022 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee notes that news about COVID-19 continues...
SCDAA partners with Phi Beta Sigma Fraternity
The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell...
SCDAA Celebrate Black History Month: Prodigy
Our final #BlackHistoryMonth highlight is dedicated to rapper and sickle cell warrior Albert “Prodigy” Johnson, one-half of the iconic 90’s rap...
SCDAA Celebrates Black History Month: Paul Williams
Meet Paul Williams, one of the founding members of the legendary Motown group The Temptations. Williams began singing as a kid...
SCDAA Celebrates Black History Month: Billy Garrett, Jr.
Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from...
SCDAA Celebrates Black History Month: Miles Davis
Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from...
In Memory of Carlton Haywood, Jr., Ph.D.
We are devastated to share the news of the passing of Carlton Haywood, Jr., Ph.D., on December 31, 2021. Carlton was an...
MARAC Advisory Statement: Update About COVID-19
December 23, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee reminds the sickle cell community...
SCDAA News Advisory: Partial Hold on Gene Therapy Trial
On December 20, the FDA placed a partial hold on bluebird bio’s clinical program for lovotibeglogene autotemcel (lovo-cel) gene therapy, temporarily...
SCDAA names Regina Hartfield CEO
The Sickle Cell Disease Association of America (SCDAA) named Regina Hartfield as CEO and president effective Jan. 14, 2022. Hartfield has served...
SCDAA News Advisory: Salmonella and Sickle Cell Disease
Over the past few months, more than 1,000 people in the U.S.A. and Canada were infected with a bacteria called Salmonella....
A Word From Our Sponsor: bluebird bio
Thank you to bluebird bio for their generous support of our 49th Annual National Convention! How can you help to spark...
SCDAA launches clinical trial finder
HANOVER, Md.—The Sickle Cell Disease Association of America launched a sickle cell disease clinical trial finder, a centralized, simple-to-navigate website to...
SCDAA holds 49th annual national convention virtually
The Sickle Cell Disease Association of America will hold its 49th annual national convention virtually this year from Tuesday, Oct. 12,...
MARAC Advisory Statement Update About COVID-19 Vaccines
September 24, 2021 — News about COVID-19 continues to move quickly as we weather the pandemic. The Sickle Cell Disease Association...
GBT and Sickle Cell Disease Association of America to Host 10th Annual Sickle Cell Disease (SCD) Therapeutics Conference
Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure to deliver keynote SOUTH SAN FRANCISCO, Calif., and BALTIMORE – September...
MARAC Issues Updated COVID-19 Guidance
August 26, 2021 – The Sickle Cell Disease Association of America Medical and Research Advisory Committee has released two statements with...
HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA)
HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA) SCDAA’s mission is to advocate for people affected by sickle...
SCDAA names government relations manager
Sickle Cell Disease Association of America named John Otsuki as government relations manager. Otsuki brings experience in regulatory and legislative affairs,...
Sickle Cell Disease Association of America announces new teen ambassador
Sickle Cell Disease Association of America (SCDAA) named 14-year-old Ayana Lee Johnson the 2021-2023 SCDAA National Teen Ambassador. She was selected...
The Kidney Cancer Association and SCDAA launch KNOW & TELL
New campaign to raise awareness about connection between sickle cell trait and deadly form of kidney cancer. The Kidney Cancer Association...
The Hibiscus Study is Enrolling Volunteers
Study Title: An adaptive, randomized, placebo-controlled, double-blind, multi-center study of oral FT-4202, a pyruvate kinase activator, in patients with sickle cell...
Walk with the Stars to support Sickle Cell Disease Association of America
Sickle Cell Disease Association of America will hold the eighth annual Walk with the Stars fundraiser, where participating teams and individuals...
MARAC Statement on Gene Therapy & Bone Marrow Therapies
Please note: A previous version of this advisory incorrectly stated that MARAC is aware of three cases of leukemia and other...
GBT and SCDAA Kick Off “Lift Every Voice to Shine the Light on Sickle Cell”
May 04, 2021 at 8:00 AM EDT SOUTH SAN FRANCISCO, Calif. and HANOVER, Md., May 04, 2021 (GLOBE NEWSWIRE) —In recognition...
SCDAA partners with Sickle Cell Community Consortium
Sickle Cell Disease Association of America partnered with the Sickle Cell Community Consortium to advocate for legislation benefiting people with sickle...
SCDAA Launches New Educational Materials to Support Children’s Blood Transfusion
Sickle Cell Disease Association of America, Inc. (SCDAA) and Hemanext Inc., a privately held medical technology company dedicated to improving the...
Temporary Suspension of Clinical Trials
March 1, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of...
Black History Month: Dr. Roland Scott
For our final #SCDHistoryHighlight of Black History month, we are excited to reflect on the life and work of Dr. Roland...
Black History Month 2021: Dr. Angella Dorothea Ferguson
We’re excited to continue our celebration of Black history this week by highlighting the life and work of Dr. Angella Dorothea Ferguson,...
Statement from SCDAA MARAC
February 16, 2021 – We are aware of the announcement today from bluebird bio regarding the temporary suspension of the clinical...