Sickle Cell Disease Association of America Recognized for Leadership

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May 5, 2022

Sickle Cell Disease Association of America recognized for leadership

HANOVER, Md.—The Sickle Cell Disease Association of America received the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders. The annual award honors organizations that serve members with strong leadership in advocacy and education.

“We’re grateful for the recognition at the Sickle Cell Disease Association of America,” said Regina Hartfield, president and CEO of the association. “It wouldn’t have been possible without the dedication, hard work and unwavering commitment of the sickle cell community, including our sickle cell warriors, caregivers, staff from the national office and partners. They deserve all the praise.”

The Sickle Cell Disease Association of America will receive the award during a live ceremony at the Rock & Roll Hall of Fame in Cleveland, Ohio, on June 26, 2022, during the National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum.

The National Organization for Rare Disorders is an independent advocacy organization representing all patients and families affected by rare diseases in the United States. Together with over 300 disease-specific member organizations, more than 17,000 advocates across all 50 states and national and global partners, the organization works to improve the lives of those impacted by rare diseases.

Sickle cell disease is an inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anemia, jaundice, gallstones, stroke, chronic pain, organ damage, and premature death. No universal cure exists. (sicklecelldisease.net)

Sickle Cell Disease Association of America advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education, and patient and community services. (www.sicklecelldisease.org)