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...
September is Sickle Cell Awareness Month
Help us increase awareness about sickle cell disease and sickle cell trait.
MARAC Advisory Statement: Immunizations
SCDAA’s Medical and Research Advisory Committee (MARAC) issues a statement on immunizations.
“Joining Forces for Our Future”
50th National Annual Convention | Oct 11-15, 2022 | Virtual
SCDAA’s Clinical Trial Finder
Find a study near you with our new clinical trial finder.
MARAC Issues an Update on COVID-19 and Sickle Cell
Learn more about important COVID-19 updates from MARAC.
A Forgotten Disease
Living with Sickle Cell Disease
Handled with Care
Find a Provider
A Message of Hope
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Sickle Cell News
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...
Support the CDC’s World Sickle Cell Day Social Media Campaign!
Have you experienced barriers to care in the emergency department? In recognition of World Sickle Cell Day on June 19, the Centers...
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 Announces Change in Leadership
Beverley Francis-Gibson will be stepping down as SCDAA’s fifth President and CEO on November 12, 2021, after serving the organization for...
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...
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’s Teen Ambassador Contest is Open!
Could you be our next Teen Ambassador? SCDAA is searching for the newest members of our team to represent their generation...
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...
SCDAA names government relations manager
Sickle Cell Disease Association of America named Nathan Parsons as government relations manager. Parsons brings experience in politics, policy and legislation....
SCDAA names program manager
Sickle Cell Disease Association of America (SCDAA) named Briana Hunter program manager. In her position, Hunter oversees the association’s Newborn Screening...
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...
SCDAA Celebrates Black History Month 2021
Sickle cell disease plays an important role in black history, and vice versa. This month, we will highlight African American sickle...
SCDAA promotes Kevin Amado Jr.
Sickle Cell Disease Association of America promoted Kevin Amado Jr. to community impact and engagement manager. Amado joined the association last...
MARAC Advisory Statement: COVID-19 Vaccines
Download the MARAC Alert | Download Spanish Translation | Download French Translation December 14, 2020 – News is evolving rapidly about...
Sickle Cell Disease Association names leadership
Sickle Cell Disease Association of America named Dr. Lewis Hsu chief medical officer and JaKela Walker chair of the board of...
Sickle Cell Disease Association of America and Aruvant Sciences Forge New Partnership to Educate Around Gene Therapy
The Sickle Cell Disease Association of America (SCDAA) and Aruvant Sciences are proud to announce a new partnership to create educational...
Sickle Cell Disease Association holds 48th annual national convention virtually
Sickle Cell Disease Association of America will hold its 48th annual national convention virtually this year from Tuesday, Oct. 13, through...
September is Sickle Cell Awareness Month
Sickle Cell Disease Association celebrates National Sickle Cell Awareness Month Conferences, advocacy, blood donations and other events held throughout September HANOVER,...
MARAC Advisory Statement on Post-secondary and Boarding School Education in the Age of COVID-19
SHOW THIS TO YOUR SCHOOL ADMINISTRATOR TO HELP THEM HELP YOU. July 31, 2020 – Opportunities for education after high school include...
MARAC Advisory Statement for SCD Patients Who are Teachers, Administrators, and Other Support Staff during School Reopening
SHOW THIS TO YOUR EMPLOYER TO HELP THEM HELP YOU. July 31, 2020 – The Medical and Research Advisory Committee (MARAC) of...
SCDAA MARAC Position on 2020 School Reopening
SCDAA MARAC Position on 2020 School Reopening SHOW THIS TO YOUR CHILD’S SCHOOL PRINCIPAL TO HELP THEM HELP YOU. July 27,...
NEW SCDAA CHAPTER MEMBERS
SCDAA proudly announces the addition of two new members joining its ranks: Supporters of Families With Sickle Cell Disease, Inc., in Tulsa...
SCDAA Shines the Light on Sickle Cell
SCDAA SHINES THE LIGHT ON SICKLE CELL Join SCDAA’s Twitter Party June 19, 2020 9 a.m. – 9 p.m. (June 15,...
MARAC Advisory Statement Regarding SCD Patients during the time of “Reopening” the U.S. Economy
May 14, 2020 – On Thursday April 16, 2020, the U.S. Coronavirus Taskforce provided recommendations on reopening the economy, giving states...
SCDAA Adds Two New Member Organizations
SCDAA is proud to welcome two new member organizations to its ranks, bringing its total number of chapters up to 48....
Social Adjustments & Response to COVID-19
SCDAA medical advisory and research committee shares advice to help with the COVID-19 status. Please click image to download and share....
Social Adjustments & Response to COVID-19
SCDAA medical advisory and research committee shares advice to help with the COVID-19 status. Please click image to download and share....
Sickle Cell Disease Association of America Partners with HealthWell Foundation
New Fund Launches to Provide Financial Assistance to People with Sickle Cell Disease Copayment and Premium Assistance Now Available (April 15,...
Sickle Cell Disease Association of America Extends its COVID-19 Emergency Fundraiser
The Need Continues to Grow The Sickle Cell Disease Association of America is extending its COVID-19 Emergency Fund Campaign to raise funds and...
SCDAA Receives $100,000 Donation from GBT
Funds will be deployed to help SCDAA member organizations (April 2, 2020 – Hanover, MD) Responding to the Sickle Cell Disease...
Sickle Cell Disease Association of America Aims to Raise $100,000 in 10 Days to Address Coronavirus
Raising Money and Giving Grants to Member Organizations in the United States The Sickle Cell Disease Association of America has launched...
NEW – Sickle Cell Disease and COVID-19: Provider Advisory
Download Provider Advisory Download Sub-Saharan African Provider Advisory An Outline to Decrease Burden and Minimize Morbidity This document will be updated...
NEW – Health Alert for People with Sickle Cell Disease and their Caregivers
DOWNLOAD PATIENT PDF (Spanish Version) DOWNLOAD PATIENT SUB-SAHARAN AFRICAN PDF SHOW THIS TO YOUR MEDICAL PROVIDERS TO HELP THEM HELP...
A Health Note From Dr. Biree Andemariam, SCDAA Chief Medical Officer
What You Need to Know About the Coronavirus (COVID-19) With COVID-19 on the forefront of nearly everyone’s minds, SCDAA wants to...
ASH and FDA Unveil New Recommendations to Guide Clinical Development of Sickle Cell Disease Therapies
Joint FDA/ASH Led Initiative Highlights Importance of Using Patient Reported Outcomes and Biomarkers in Clinical Trials to Advance SCD Therapies (WASHINGTON,...
GBT’s Oxbryta™ (voxelotor) tablets is approved for the treatment of sickle cell disease
Oxbryta™ (voxelotor) tablets Now Approved On behalf of GBT, we are happy to share that Oxbryta (pronounced ox-brye-ta) is now approved...
New Hope for a Sickle Cell Cure
How gene therapy is helping children with this devastating disease. By Joy Harrington, Writer When Mr. and Mrs. Jones married and left...
FDA Approves Global Blood Therapeutics Sickle Cell Disease Drug
(Reuters) – The U.S. Food and Drug Administration said on Monday it approved a drug from Global Blood Therapeutics Inc to...
CRISPR Therapeutics and Vertex Announce Positive Safety and Efficacy Data
Nov 19, 2019 CRISPR Therapeutics and Vertex Announce Positive Safety and Efficacy Data From First Two Patients Treated With Investigational CRISPR/Cas9...
US approves new drug to manage sickle cell disease
By LINDA A. JOHNSON | November 15, 2019 | APNews.com U.S. regulators on Friday approved a new medicine that can help...
Novartis Adakveo approved by FDA for Sickle Cell Disease
New Novartis medicine Adakveo® (crizanlizumab-tmca) approved by FDA to reduce frequency of pain crises in individuals living with sickle cell disease Sickle...
New Children’s Book Aims to Inspire Children with SCD
Two health educators have written a children’s book about living with sickle cell disease (SCD). I’m No Different Than You tells...
SCDAA President and CEO Receives Award from National Association of Real Estate Brokers (NAREB)
Sickle Cell Disease Association of America, Inc. (SCDAA) is proud to announce that SCDAA President and CEO Beverley Francis-Gibson was honored...
Donate Blood to Support Sickle Cell Patients
September is Sickle Cell Awareness Month; Red Cross blood and platelet donations needed for patients This school year students battling sickle...
GBT and SCDAA to Host 8th Annual Sickle Cell Disease (SCD) Therapeutics Conference
GlobalBlood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) announced that they will host...
SCDAA Announces New Keynote Speaker for Convention
SCDAA is excited to welcome Marie Olivieri Russell, MD as a keynote speaker at the 47th Annual National Convention this October...
SCDAA Hires New Communications and Public Relations Manager
SCDAA welcomes Jacqueline Burrell, Principal of J Burrell Communications, LLC, as Communications and Public Relations Manager. Burrell has a wealth of...
Convention Keynote Speaker Announced
SCDAA is excited to feature Dr. Amanda Brandow as a keynote speaker at the 47th Annual National Convention in October. In...
SCDAA Hires New Program Manager
Arielle Juberg, MPH, has joined SCDAA as Program Manager in support of the SCD Newborn Screening Project. Juberg has held notable...
‘Sickle Cell Saturday’ Highlights Value of Clinical Trials to the SCD Community
The Sickle Cell Foundation of Georgia, Inc. and SCDAA, Inc. are hosting a special luncheon for the SCD community. Sickle Cell...
SCDAA Forms International Media Partnership to Spread SCD Awareness
New International Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait Sickle Cell...
SCDAA Hires New Care Coordinator
Alikah Adair joins SCDAA as Care Coordinator in support of the SCD Newborn Screening Project. Adair has an extensive history working...
SCDAA Partners with The Pain Community to Support the Sickle Cell Community by Providing Comprehensive Integrative Pain Management Educational Information
Sickle Cell Disease Association of America, Inc. (SCDAA) and The Pain Community are proud to announce a new partnership that will...
GBT and Advocates Launch Disease Awareness Campaign Focused on Breaking Down Stigmas Associated with Sickle Cell Disease
Company Also Launches Disease Awareness Campaign to Raise Awareness Among Physicians About the Silent Damage Caused by Sickle Cell Disease Global...
SCDAA Hires New Communications Manager
SCDAA welcomes Laura Lewis Brown to the role of Communications Manager. Brown has extensive expertise in the Communications field which includes...
SCDAA Hires New Project Director
SCDAA welcomes Ashley Clark as Project Director in support of the SCD Newborn Screening Project. Clark’s professional experience includes the following:...
SCDAA Hires New Senior Accountant
Melvina Singleton has joined SCDAA as Senior Accountant. Singleton’s prior experience includes financial manager positions as a Controller, Fund Accountant, and...
BLACKDOCTOR.ORG is a New Media Partner of the Sickle Cell Disease Association of America, Inc.
New National Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait Sickle Cell Disease...
SCDAA Plans June 22 ‘Walk With the Stars’ Fundraiser in Baltimore
The June 4, 2019 issue of Sickle Cell Anemia News features Kiarra Roseburgh, the National Child Ambassador for the Sickle Cell...