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...
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Welcome back! Join us for a mindfulness exercise and start the week off right.
Discover the art and legacy of the late Hertz Nazaire.
Join us as we look to the next 50 years of hope, awareness and progress.
Learn the tools you need to manage your mental health as a sickle cell warrior.
Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell...
The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell...
SCDAA Medical and Research Advisory Committee (MARAC) Statement: Pfizer’s Voxelotor (Oxbryta®) Withdrawal 9/27/24 What is the news? Pfizer announced the withdrawal...
All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the...
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 Aug. 13, 2024 – More infections with parvovirus B19, also known as “fifth...
The World Health Organization (WHO) recently published a comprehensive package of interventions for sickle cell disease management in Africa. The package...
Know Your Rights in the Emergency Department – Biden Administration Releases New Guidance The Centers for Medicare & Medicaid Services (CMS)...
SCDAA joins the National Medical Association, the American Medical Association, the American Association of Medical Colleges, and other groups, in advocating...
It is with great sadness that SCDAA shares the news of the passing of Monica Rockwell, executive director of SWGA Sickle...
The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell...
During our 50th Annual National Convention in 2023, SCDAA was proud to exhibit the artwork of Hertz Nazaire at a pop-up...
Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This article was written by Dr. Lewis...
SCDAA is pleased to announce that we have joined the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council. IGT advocates...
HELP US REACH OUR GOAL – DONATE TODAY Did you know that February 29 is Rare Disease Day? This important event...
Today, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model,...
This weekend’s Saturday Night Live skit about the recent historic approvals of potentially curative gene therapies for sickle cell disease is...
Download a Printable Brochure | Download a Printable Statement Two gene therapies were approved in Dec. 2023 by the Food and...
On Dec. 8, 2023, the Food and Drug Administration (FDA) approved two cell-based gene therapies for sickle cell disease (SCD), Casgevy...
We are very excited to share that today, Dec. 8, the Food and Drug Administration approved two gene therapies to treat...
On October 31, 2023, the Food and Drug Administration is poised to make a landmark decision about exagamglogene autotemcel (exa-cel) gene...
Learn more about how to stay healthy leading up to, during and after a pregnancy with these newly developed fact sheets...
The Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news of the passing of Dr. Lennette...
Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This article was written by Dr. Lewis...
NEW RESOURCE AVAILABLE: This tool from the National Alliance of Sickle Cell Centers can help sickle cell providers make important decisions...
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 Hematopoietic Stem Cell Transplant for Sickle Cell Disease from HLA-matched Sibling Donor (MSD HCT) Sept....
Sept. 16, 2023 – The worldwide pandemic of COVID-19 (SARS-CoV2) infections seem to have settled down, and we are now seeing...
Leading Sickle Cell Organization and MedicAlert Foundation Launch Pilot Program to Improve Emergency Care During Sickle Cell Pain Crises Non-profits partner to...
All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the...
This morning, we were notified that some users experienced issues using our 2023 National Abstract Competition portal. This issue has been...
July 7, 2023 – SCDAA’s Medical and Research Advisory Committee (MARAC) notes that the European Medicines Agency’s (EMA) Committee for Medicinal...
Sickle Cell Disease Association of America Teams with MedicAlert Foundation to Improve Emergency Outcomes During Sickle Cell Crises Nonprofits partner to...
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 is a blog featuring the voices of SCDAA’s clinical leadership team. Part 1 of our Gene Therapy series was...
Did you know that the federal government is poised to make some of the biggest decisions in sickle cell history right...
Maryland Governor Wes Moore has signed a proclamation to make June 19, 2023, Sickle Cell Awareness Day! This recognition goes a...
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell disease,...
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Marilyn...
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, named...
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Yvette...
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Helen...
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, formed...
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth Meet Dr. Angella...
SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month...
SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month...
SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month...
Penicillin VK solution is suffering from intermittent supply shortages. This can affect children with sickle cell disease. Penicillin VK in liquid...
The Sickle Cell Disease Association of America, Inc., joins the Foundation For Sickle Cell Disease Research (FSCDR) in condemning the use...
CMO Speaks is a blog featuring the voices of SCDAA’s clinical leadership team. The below article was written by Dr. Lewis...
December 6, 2022 — The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) shares the following:...
An update from John Otsuki, SCDAA government relations manager As I am sure you’re aware, the United States recently completed a...
The NFL’s My Cause My Cleats campaign features players showcasing important causes on their cleats each year during Week 13 games...
The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) believes that progress in sickle cell disease...
Many people have questions about sickle cell trait after newborn screening. Dr. Lewis Hsu, SCDAA chief medical officer, answers some of...
This week, two new publications call attention to the barriers to care children with SCD face. Prioritizing Sickle Cell Disease, an article co-authored...
August is National Immunization Awareness Month. What does that mean for individuals with sickle cell disease (SCD)? The Big Picture from...
September is Sickle Cell Awareness Month. Check out these helpful tools and learn more about how to support sickle cell warriors!...
Join an SCDAA member organization at one of these great events this September! The Amazing Race 5K/1K | Starts September 1 |...
Dear Sickle Cell Community, Over the past several months, SCDAA has been working with congressional sickle cell disease (SCD) champions and...
SCDAA regrets to announce that Dr. Samir Ballas passed away on August 12. He was devoted to caring for adults with...
July 20 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of the news...
Dr. Kwaku Ohene-Frempong, a visionary sickle cell doctor and advocate, passed away on May 7, 2022, at 76. A memorial service...
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...
Partnership Calls on Policymakers to Implement Proposals in 2020 Landmark Report Today, in recognition of World Sickle Cell Day on June...
The Sickle Cell Disease Association of America named Reginald Hart Jr. as chief financial officer. Hart brings more than 20 years...
The Centers for Disease Control and Prevention (CDC) recently drafted an update to its guidelines for prescribing opioids and reached out...
We are devastated to learn of the death of Dr. Kwaku Ohene-Frempong on Saturday, May 7, 2022. Dr. Ohene-Frempong was a...
The Sickle Cell Disease Association of America received the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders....
March 2022 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee notes that news about COVID-19 continues...
The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell...
Our final #BlackHistoryMonth highlight is dedicated to rapper and sickle cell warrior Albert “Prodigy” Johnson, one-half of the iconic 90’s rap...
Meet Paul Williams, one of the founding members of the legendary Motown group The Temptations. Williams began singing as a kid...
Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from...
Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from...
We are devastated to share the news of the passing of Carlton Haywood, Jr., Ph.D., on December 31, 2021. Carlton was an...
December 23, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee reminds the sickle cell community...
On December 20, the FDA placed a partial hold on bluebird bio’s clinical program for lovotibeglogene autotemcel (lovo-cel) gene therapy, temporarily...
The Sickle Cell Disease Association of America (SCDAA) named Regina Hartfield as CEO and president effective Jan. 14, 2022. Hartfield has served...
Over the past few months, more than 1,000 people in the U.S.A. and Canada were infected with a bacteria called Salmonella....
Thank you to bluebird bio for their generous support of our 49th Annual National Convention! How can you help to spark...
HANOVER, Md.—The Sickle Cell Disease Association of America launched a sickle cell disease clinical trial finder, a centralized, simple-to-navigate website to...
The Sickle Cell Disease Association of America will hold its 49th annual national convention virtually this year from Tuesday, Oct. 12,...
September 24, 2021 — News about COVID-19 continues to move quickly as we weather the pandemic. The Sickle Cell Disease Association...
Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure to deliver keynote SOUTH SAN FRANCISCO, Calif., and BALTIMORE – September...
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) SCDAA’s mission is to advocate for people affected by sickle...
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 (SCDAA) named 14-year-old Ayana Lee Johnson the 2021-2023 SCDAA National Teen Ambassador. She was selected...
New campaign to raise awareness about connection between sickle cell trait and deadly form of kidney cancer. The Kidney Cancer Association...
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...
Sickle Cell Disease Association of America will hold the eighth annual Walk with the Stars fundraiser, where participating teams and individuals...
Please note: A previous version of this advisory incorrectly stated that MARAC is aware of three cases of leukemia and other...
May 04, 2021 at 8:00 AM EDT SOUTH SAN FRANCISCO, Calif. and HANOVER, Md., May 04, 2021 (GLOBE NEWSWIRE) —In recognition...
Sickle Cell Disease Association of America partnered with the Sickle Cell Community Consortium to advocate for legislation benefiting people with sickle...
Sickle Cell Disease Association of America, Inc. (SCDAA) and Hemanext Inc., a privately held medical technology company dedicated to improving the...
March 1, 2021 – The Sickle Cell Disease Association of America’s Medical and Research Advisory Committee (MARAC) is aware of...
For our final #SCDHistoryHighlight of Black History month, we are excited to reflect on the life and work of Dr. Roland...
We’re excited to continue our celebration of Black history this week by highlighting the life and work of Dr. Angella Dorothea Ferguson,...
February 16, 2021 – We are aware of the announcement today from bluebird bio regarding the temporary suspension of the clinical...
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