Sickle Cell Disease

Sickle cell disease (SCD) is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body.

National Resources

              Sickle Cell Disease Association of America: www.sicklecelldisease.org

             “Our mission is: To advocate for and enhance our membership’s ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and   related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.”

SiNERGe: http://wepsicklecell.org/sinerge/

Our mission is: To gather momentum in the fight against sickle cell disease by fostering connections among community-based organizations in the Northeast region

Social Security Benefits

If sickle cell anemia has left you unable to work, you may be eligible to receive Social Security Disability benefits. Read more here: https://www.disability-benefits-help.org/disabling-conditions/sickle-cell-disease-and-social-security-disability

Support Groups

• Roc-City Sicklers

  • Monthly meetings with speakers, information sharing and fellowship.

  • Email sickle.rochester@gmail.com for more information

• Sickle Cell Thalassemia Patients Network

For Health Care Providers

Improving Care for People with Sickle Cell Disease - in this video, healthcare providers throughout the country discuss strategies for overcoming the obstacles of sickle cell disease.

Contact Stacey Smith @ StaceyL_Smith@urmc.rochester.edu or call (585) 276-7932 to add your services to this list, make changes or suggestions.