As our nation recognizes National Sickle Cell Disease Awareness Month, we do so with an unwavering commitment to a future in which people with the condition live fully, without pain and impediments, and ultimately experience a cure. My Administration, through the Department of Health and Human Services (HHS), is leading unprecedented activity in research, medical education, and models of care in support of people with Sickle Cell Disease (SCD).

A cure is within reach, the Food and Drug Administration (FDA) has approved new treatments and more are on the horizon, and several initiatives are underway to make better use of all available tools in the battle against this disease.

HHS and Howard University are hosting a Healthathon to foster innovative and data driven solutions for sickle cell disease.

Health+ is focused on Sickle Cell Disease (SCD), those with SCD, and the systems that enable or block patient care. Specifically, Healthathon participants will be focusing on three main areas: the difficulty of emergency room care for those with SCD, the often very difficult transition from pediatric SCD care to adult care, and  improving treatment options and sustainable outcomes for SCD patients. 

During two weeks in September, we are inviting individuals and teams to draft solutions on challenges using background materials provided and their own ingenuity.

Date:

September 3, 2020 - September 25, 2020

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Join us for a Zoom gathering as we celebrate National Sickle Cell Awareness Month.

We look forward to seeing you ONLINE and IN RED!

Date & Time:
September 28, 2021
06:00 PM - 07:00 PM

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Join Foundation for Women & Girls with Blood Disorders (FWGBD) at its biennial educational conference for professionals dedicated to the care and support of women and girls with blood disorders. The FWGBD 2022 Conference will be held on September 24-25, 2022 at the Hyatt Regency Crystal City in Arlington, Virginia.

Whether you are an established physician, medical student thinking about what’s next, or clinic nurse working with patients with blood disorders, FWGBD 2022 has something for you. Tap into a diverse network of active healthcare professionals who have a shared commitment to the unique needs of women and girls with blood disorders. Harness the collective knowledge and experience of your peers with a fresh perspective. Energize your team with new insights, ideas, and strategies drawn from multidisciplinary collaboration at FWGBD 2022.

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This year’s Policy Summit will offer a variety of stakeholder perspectives on hot topics in the gene therapy field and how they inform regulatory, legislative, and payment policies for diagnosis and treatment.

Date:
September 22-24, 2021

Sign up to participate in SCDAA's Sickle Cell Awareness Month Twitter Party! Use the hashtag #SickleCellMatters on Thursday, September 9, 2021; Tuesday, September 21, 2021; and Thursday, September 30, 2021 from 12:30-1:30 p.m. EST. We will share our collective posts for a time of sharing, learning and celebrating.

The Sickle Cell Disease Matters Walk 2021 will engage the community and increase awareness about sickle cell disease, the need for better treatment throughout a patient's lifetime and ultimately find a cure.

The Sickle Cell Disease Association of America Michigan Chapter is celebrating 50 years of service to individuals living with sickle cell disease and their families.

Unfortunately, due to the current COVID pandemic conditions we have made the difficult but necessary decision to make the walk completely virtual.

Date:
September 1, 2021 to September 30, 2021

The regulatory approval of a groundbreaking new Sickle cell disease drug in the United States by the Food and Drugs Administration (FDA) sparked off plenty of hope and optimism earlier this month and the news that it is already heading for clinical trials in some African countries was also welcomed. But that optimism has been replaced by concerns the new treatment is priced beyond the reach of the majority of sufferers on the continent.

Swiss pharma giant Novartis announced this month the US FDA approved its new drug crizanlizumab, marketed as Adakveo, for adults and patients over 16 to start using the medication in a matter of weeks. In recent years Hydroxyurea has been the standard-of-care drug for the treatment of sickle cell disease’s pain crisis.

The Centers for Disease Control and Prevention (CDC) will share an award total of nearly $1.2 million with institutions in seven U.S. states, allowing them to take part in a data gathering program on sickle cell disease and how it affects daily life.

The funding brings to nine the number of states in the CDC’s Sickle Cell Data Collection program. The new states join Georgia and California as CDC partners in efforts to gain population-based, comprehensive health information. The program is aimed at better understanding the needs of sickle cell disease (SCD) patients, and in developing therapies more suited to their needs and providing greater support.

“HHS is committed to normalizing the lives of people living with sickle cell within 10 years,” Brett Giroir, MD, assistant secretary for health at the Department of Health and Human Services, which includes the CDC, said in a news release.

The National Institutes of Health plans to invest at least $100 million over the next four years toward an audacious goal: develop affordable, gene-based cures for sickle cell disease (SCD) and HIV. The Bill & Melinda Gates Foundation will also invest $100 million toward this goal. The intention is for these cures to be made globally available, including in low-resource settings.

This initiative follows a bold announcement made earlier this year by President Donald J. Trump during the State of the Union Address to end the HIV epidemic in the United States in the next 10 years. Ending the HIV Epidemic: A Plan for America(link is external) aims to leverage the powerful data and tools now available to reduce new HIV diagnoses in the United States by 75% in five years and by 90% by 2030. The Trump Administration has also elevated the attention paid to sickle cell disease, identifying it as an intractable health challenge with the potential for dramatic advances in the coming years.