In a historic move aimed at spotlighting a vital public health issue, the U.S. Department of Health and Human Services (HHS) will hold its first-ever Sickle Cell Disease (SCD) Summit on Tuesday, September 24, 2024, at the Hubert H. Humphrey Building in Washington, D.C. This landmark event will take place as part of National Sickle Cell Awareness Month and is designed to bring together individuals, health professionals, and advocates from across the country to focus on advancements in SCD care, research, and overall quality of life for those living with the disease.

 

Uniting the SCD Community: A Bold Theme for Progress

Themed Empowered and Thriving: SCD Warriors and Communities, the summit is more than just a platform for discussion; it is a call to action. The goal is to amplify the voices of those impacted by SCD and explore new opportunities to improve health outcomes, foster research, and elevate the standard of care for individuals affected by the disease. 

The event aims to bring together people with SCD, their families, healthcare providers, policymakers, and community advocates to form a united front in the fight against this life-altering disease. HHS Secretary Xavier Becerra will kick off the summit with opening remarks, emphasizing the importance of innovation in healthcare and the federal government’s commitment to addressing the needs of underserved communities, including those living with Sickle Cell Disease.

Celebrity Spotlight: Wunmi Mosaku to Share Personal Journey

One of the most highly anticipated moments of the summit is an exclusive fireside chat featuring acclaimed actress Wunmi Mosaku, best known for her roles in Deadpool & Wolverin* and Loki. Mosaku will discuss how her own battle with Sickle Cell Disease shaped her reproductive health journey, offering a deeply personal narrative that shines a light on the unique challenges faced by women with SCD. Her story will serve as an inspiration to many while also raising awareness of the complexities that individuals with SCD encounter in their day-to-day lives.

A Packed Agenda: Insightful Panels and Key Speakers

The summit will also feature an array of panel discussions that bring together Members of Congress, leading healthcare providers, SCD warriors, and community advocates. These panels will dive into the latest research, explore innovative treatments, and discuss the social, economic, and healthcare challenges faced by individuals with Sickle Cell Disease. A focus on community advocacy will underscore the summit's commitment to empowering communities to play an active role in SCD care and advocacy.

While full details of the summit agenda are still forthcoming, attendees can expect a day packed with insightful conversations that highlight the tireless efforts of researchers, medical professionals, and advocates dedicated to improving the lives of those affected by SCD.

  

 

Why the Summit Matters: Addressing a Long-Ignored Disease

Sickle Cell Disease is a hereditary blood disorder that affects approximately 100,000 Americans, disproportionately impacting African American and Hispanic populations. For decades, SCD has been underfunded and under-researched, leading to a lack of accessible treatment options and systemic healthcare disparities for those living with the condition. 

However, recent breakthroughs in gene therapies, blood transfusion advancements, and  patient advocacy have ushered in a new era of hope. The HHS SCD Summit aims to not only celebrate these advancements but also serve as a platform for driving continued progress and ensuring that no one with Sickle Cell Disease is left behind. 

As HHS Secretary Becerra notes, "This summit is about empowering individuals and communities, lifting up the voices of SCD warriors, and ensuring that our healthcare system addresses the disparities that have existed for too long. We are here to make real change." 

How to Participate: Livestream and RSVP Information

The SCD Summit will take place from 9:30 AM to 4:00 PM ET and will be available via livestream for those unable to attend in person. Additional information about the agenda, speakers, and how to RSVP can be done by clicking here. This is a must-attend event for anyone passionate about healthcare, research, and the future of Sickle Cell Disease treatment.

For more info, visit hhs.gov