The William E. Proudford Sickle Cell Fund, Inc. is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3). Their mission is to support sickle cell awareness, education, state-of-the-art treatment and research, and to bring hope to families affected by this devastating disease. Our Founder, William E. Proudford, was a devoted family man, colleague, and friend who led by example, shared his joy, but never his sorrows; did not raise his voice above a whisper, and yet spoke with conviction. His calm nature and strong character brought out the best in every person he encountered. Despite a number of physical challenges, including sickle cell disease, progressive and profound hearing loss, diabetes and kidney failure, he always maintained the quiet, unassuming and steady manner that made him the bedrock of his family. Our Vision: A World Without Sickle Cell Disease Our Mission: To support sickle cell awareness, education, state-of-the-art treatment and research, and to bring hope to families affected by this devastating disease Official website

Hematologists at the Duke University Comprehensive Sickle Cell Center skillfully evaluate, diagnose, and help patients manage the different variants of sickle cell disease. Duke’s comprehensive sickle cell center is committed to providing the best diagnostic tools, treatment options, and care for sickle cell disease. In addition to our extensive array of services and resources, we research new ways of treating the disease and its complications to provide the best care to our patients. Treatment options include: -Medications -Fluid therapy -Blood transfusions -Surgery -Bone marrow transplants -Emerging treatments discovered through our clinical trials Official website

At the Division of Hematology at Montefiore Medical Center, our internationally recognized hematologists and multidisciplinary experts offer the highest quality care for the management of a broad spectrum of blood disorders, including: -Anemias, acquired or hereditary hemoglobinopathies, thalassemias -White cell disorders, such as leukopenia and leukocytosis -Stem cell disorders -Platelet disorders -Thrombosis or a blood clot in an artery -Hemorrhagic or bleeding disorders -Chronic leukemias, including chronic myeloid and lymphocytic leukemias Each year, approximately 6,500 patients come to us from across the United States for consultations, advanced diagnostics and treatments, and specialty care. Our team of physicians has expertise in the diagnosis and treatment of thrombosis and in sickle-cell anemia and offers coordinated services tailored specifically for patients with these disorders. Physicians, nurse practitioners, a social worker and patient advocate follow our patients in the outpatient clinic, in the Emergency Department, and on inpatient units. The Montefiore Sickle Cell Center for Adults (SCCA) Team manages the medical and social service needs of sickle cell patients. Official website

The Nazhi Thee Baker Angel Foundation Inc., is a 501(c)(3) non-profit organization committed to making a difference in advancing the awareness of Sickle Cell Anemia, so that strides will be made in finding a cure. ​ Our mission is to inspire hope to those affected by Sickle Cell Anemia. We want to restore faith, love, laughter, joy and a sense of belonging...thus removing the feeling of loneliness! We came up with the concept of the TLC bags. In each bag there are things that a child with sickle cell needs while in the hospital for several days at a time. We have jump ropes for healthy hearts, pinwheels for the kids to practice their breathing, socks for when they get cold and a host of other fun items like books and games to pass the time. ​ Awareness of the disease will reduce strokes, heart attacks, kidney failure, hip and knee replacements and the excruciating chronic pain that can often deform a child living with sickle cell. ​ Another goal is to educate! We want to bring light to the trigger foods that send children with sickle cell into a crisis episode. So many parents do not realize sickle cell children need to be on special diets to make sure they stay as healthy as possible. Official website

The Sickle Cell Care Coordination Initiative (SCCCI) seeks to improve care provided to youth and adults with sickle cell disease in Northern California. We are one of 8 programs in the U.S. funded by the National Heart, Lung and Blood Institute (NHLBI) to use implementation science to improve outcomes for individuals with sickle cell disease between the ages of 15 and 45 years. The SCCCI brings together experts in sickle cell disease clinical care and clinical research, health services research, implementation and participatory research and emergency medicine. Their core team also includes individuals with sickle cell disease, their family members and dedicated community members. Their aims are: -increase the number of youth and adults with sickle cell disease who receive preventive care; -support providers so they increase their adherence with evidence-based guidelines for sickle cell disease care; and -support youth and adults with sickle cell disease to access needed resources within their communities to improve their quality of life and quality of care. The primary goal of the center is to decrease the preventable morbidity and mortality that this population is vulnerable to. Official website

The Comprehensive Sickle Cell and Thalassemia Program is home to over 280 children, adolescents and young adults, with sickle cell anemia and other disorders of hemoglobin including beta thalassemia, emphasizing primary, secondary and tertiary prevention and treatment using a multidisciplinary team approach. Children’s program is recognized as one of six selected clinical centers for the management of children with sickle cell anemia by the Ohio Department of health, and oversees newborn screening, counseling, clinical management of acute complications and long-term follow–up care for the largest region of the state. Children’s highly specialized services include state-of-the-art screening and management of cerebrovasular, neurologic, cardiac and hepatobiliary complications. Our experts also provide complete transfusion support services, iron overload management, clinical psychological testing and follow-up, diagnostic testing and counseling and bone marrow transplantation. We are a leader in quality of life research in sickle cell anemia and participate in a variety of federally-funded clinical trials in sickle cell and thalassemia. This physician lead team includes a nurse practitioner, social worker, psychologist, nutritionist, nurse clinician, program coordinator, pastoral care and newborn screening coordinator. Official website

The Sickle Cell Center for Adults is dedicated to provide services for persons with sickle cell disease who live in the greater metropolitan Baltimore and Washington, D.C. areas. The Center is now in its fourth year of operation and provides comprehensive care including regularly scheduled outpatient visits, screening for hydroxyurea eligibility, genetic counseling, pain management, education, wound care and social services. The Center has full time hematologists, nurses, physician assistants, and staff devoted to the care of persons with sickle cell disease. The physician assistant addresses the acute and chronic needs of our patients on a daily basis and acts as a liaison to other medical specialties throughout the hospital. The staff have developed a relationship with the emergency department to decrease patient waiting times and have established continuity of care through follow-up in the sickle cell clinic. The Center is an honorary chapter of the National Sickle Cell Disease Association of America. Official website

Folumy Sickle Cell Foundation (FSSF) is a Non-Governmental Organization with the sole aim of utilizing the tool we call the “BREACH” to prevent and fight the menace and prevalence of Sickle Cell Disease in Nigeria. The need for advocacy, awareness as well as healthcare services for Sickle cell patients is imperative and as such, it brought about the existence of Folumy Sickle Cell Foundation. This foundation which developed from an initiative, started 2013, as a non-governmental organisation aimed at helping and being the advocate of sickle cell victims in Nigeria, reaching out to the masses who have little or no knowledge about the disease, whose financial burden has been aggravated due to the continuous and consistent break down of victims. They are group of individuals who have chosen to be a part of societal change giving voices and restoring hope to victims of Sickle cell anemia and causing others to emulate in a chain reaction. Official website

Sickle Life is a sickle cell disease advocacy group founded in 2013 by Dr. Sefakor Enam Bankas to champion the cause of persons living with sickle cell disease in Ghana through education and awareness creation about the condition. Initial advocacy was through content generated and shared via a blog, www.sicklelife.wordpress.com. The objective of which was to expose readers to the reality of living with sickle cell disease in a credible and relatable manner through the experience of patient and doctor and empower them to make informed choices regarding sickle cell disease based on the knowledge acquired. Sickle Life has grown over the period to include several volunteers and writers, multiple social media accounts, participation in several sickle cell advocacy activities and a website, to consolidate all programs and activities. Mission and Vision: -To provide education and information about sickle cell disease to empower you make an informed life choice. -We envisage, through our activities, a time when sickle cell disease will be a topic of daily discussion and not an illness relegated to the background and for whom no one advocates but its own patients and their families. -We hope for a day, when persons living with sickle cell disease can openly speak about it without fear of discrimination. -With these we can be assured that one day, soon, people will be more concerned about their sickle cell status and will make life choices based on knowledge on the condition. -With these, the incidence of sickle cell disease in Ghana can be significantly reduced from its current 2% of annual births. Official website

Children’s Hospital of Pittsburgh of UPMC is one of the four medical centers funded by Pennsylvania’s Division of Maternal and Child Health to receive newborn sickle cell screening test results. Since 1978, Children’s has been identifying children with sickle cell disease and providing children and parents with counseling, follow-up care and further genetic testing. Currently, Children’s hematologists and oncologists care for 250 children, teens and young adults up to 21 years of age with sickle cell disease. The goal of Children’s Sickle Cell Program is to identify children with sickle cell disease as early as possible and effectively manage their condition to adulthood. An expert team of medical professionals who specialize in hematology/oncology make up the Sickle Cell Program staff. The team includes physicians, clinical nurse specialists, social workers and behavioral health specialists. Children’s offers two sickle cell clinics each week, and staff travel to two satellite clinic locations three times each year. Children’s also is actively involved in both institutional and national studies that are investigating sickle cell disease and its management in an effort to improve the care of children with the disease. In addition, Children’s hematologists provide training for community physicians, nurses, nurse practitioners, social workers, school officials and others regarding the proper treatment of children with sickle cell disease. Official website