Pastor Marc Thomas, a true champion for families, suffered from the sickle cell disease. Though he was on oxygen, had a heart condition, pulmonary hypertension, wore oxygen 24 hours a day, and other complications, he refused to give up his fight for families living with sickle cell disease. Marc embodied all that was good. He passed away at the age of 46 in 2005. The Sickle Cell Association of Texas Marc Thomas Foundation that began with Marc and his wife has now outreached to over 150,000. Their efforts have greatly impacted families and individuals challenged with sickle cell disease. His legacy of championing for families suffering from the debilitating disease continues. The organization provides numerous services to children, adults and families in Central Texas, San Antonio, the Texas Gulf Coast and other areas affected with sickle cell disease and those carrying sickle cell trait. They provide services such as education, research awareness, outreach, support group meetings, assistance and numerous other services. Official website

Pediatric Hematology specialists at the Alabama Center for Childhood Cancer and Blood Disorders, a program of the University of Alabama at Birmingham (UAB) and Children’s of Alabama, diagnose and treat bleeding disorders and non-cancer blood diseases such as hemophilia, von Willebrand disease, sickle cell disease, thalassemia, and other anemias. The nationally recognized, federally funded Comprehensive Hemophilia Treatment Center provides care for more than 200 patients with bleeding disorders. The Center provides care for more than 1000 infants, children and adolescent patients with sickle cell disease throughout the state of Alabama. UAB is a nationally recognized academic center conducting research to help prevent complications of disease and to find a cure. This research has led to reductions in life limiting strokes during childhood and painful events that previously limited patient’s lives. Patients with rare blood disorders are also cared for at the Alabama Center for Childhood Cancer and Blood Disorders. With access to life-saving bone marrow transplantation, the Center offers patients the unique opportunity to be cured of their disease at an early age. Official website

Specialists in the Sickle Cell Disease Program at Dana-Farber/Boston Children's Cancer and Blood Disorders Center provide diagnosis, treatment and long-term health management for children and young adults with all types of sickle cell disease. Located in Boston, MA, we are an international leader in improving treatment and quality of life for children affected by sickle cell diseases, including: -Sickle cell anemia (HbSS) -Sickle cell with hemoglobin C disease (HbSC) -Hemoglobin S-beta-thalassemia -Other, less common compound forms, including HbSD, HbSO and HbSE At Dana-Farber/Boston Children's, all patients with sickle cell disease and other serious blood disorders are assigned a social worker to help manage the challenges of ongoing treatments that are often required. Our social workers will provide emotional, psychological and logistical support to patients and families from diagnosis to adulthood. Official website

University Hospitals Seidman Cancer Center’s Adult Sickle Cell Disease Clinic in Cleveland, Ohio, offers complete care for adults in northeast Ohio with sickle cell disease. Sickle cell disease is an inherited anemia named for the unusual shape of red blood cells found in people with this disease. In addition to providing advanced medical care, the Adult Sickle Cell Disease team participates in local and national research projects on sickle cell, and participates in national and international meetings on the disease. People with sickle cell disease have to deal with pain from the disease and with frequent hospital visits to treat this pain and other complications of the disease. Patients with sickle cell disease may also suffer from heart, blood vessel, lung, brain and kidney damage. The number of health problems and doctor visits to address these problems can be overwhelming for both patients and their families. Their fellowship-trained, board-certified specialists understand the challenges for people with sickle cell disease. We provide comprehensive care to patients with this chronic illness in one location. Clinical specialties such as pulmonology (lung), cardiology (heart), pain management, and gynecology all provide clinical services through our adult multidisciplinary clinic. Official website

The Sickle Cell Research Program at Children’s Hospital of Wisconsin Research Institute and the Medical College of Wisconsin is one of 11 sites funded by the National Heart Lung and Blood Institute. Sickle cell research programs are a collaboration of Children’s Research Institute, the Medical College, BloodCenter of Wisconsin’s Blood Research Institute and the MACC Fund. Our researchers have studied: -Hemolysis-induced vascular injury in sickle cell disease -Red blood cell adhesion in sickle cell disease -The mechanisms by which proinflammatory lipids and high-density lipoproteins function to impair vasodilation in sickle cell disease -Cysteinyl leukotrienes receptor inhibitors as a target for decreasing sickle cell disease-related morbidity -Pain outcomes in human sickle cell disease -Quality of life in children with sickle cell disease Official website

The Comprehensive Sickle Cell Center at Cincinnati Children’s is a national leader in caring for children with sickle cell disease, thalassemia, and other hemoglobin disorders. We work closely with families to help their children thrive despite health challenges. As part of the Cancer and Blood Diseases Institute, our center is large enough to offer exceptional patient care and research, yet small enough for us to get to know children and families to personalize their care. Our team of physicians, nurses and other health professionals currently care for more than 300 patients with hemoglobin disorders. We provide comprehensive care, psychological support, social services, education and counseling. Services: -Coordination of newborn screening follow-up testing, education and counseling for hemoglobin disorders -Comprehensive care for patients from birth through young adulthood -Access to novel therapies through our partnership with the National Institutes of Health -24-hour emergency care through the Cincinnati Children’s Emergency Department, with support from an on-call hematologist -Extensive hemoglobinopathy laboratory testing Official website

With the right experts and the right care, sickle cell disease is a manageable condition. Board-certified hematologists at Levine Children's Hospital have deep experience in managing sickle cell in children and young adults, providing care that keeps their complications down and improves their quality of life. They offer the full range of treatment, guidance and support both in our outpatient clinic and in the child-focused environment. On top of providing specialized treatment and management, their care team understands the impact sickle cell has on every aspect of your child's life. They offer: -Doctors and staff focused on your child's overall wellbeing and long-term monitoring of their treatment -Child life specialists who walk you and your child through the treatment process and provide emotional support -Connection with your child's school, teachers and staff to boost their social and educational support -Patient navigators to guide you through your child's journey and help coordinate the process of their care Official website

Connecticut Children’s is one of the few centers that offer a sickle cell pulmonary clinic. The clinic is devoted to sickle cell patients and is held once every other month. Please call 860.545.9440 to make an appointment. You may also be referred to a lung specialist by your hematologist. Official website

For nearly 20 years, NICHQ (pronounced 'nitch-cue') has been guided by a profound passion for every child to achieve optimal health. We’ve made it our sole mission to drive dramatic and sustainable changes in the complex health issues facing children and their families. You could say we embody change. We know how to create pathways and partnerships, get real traction on tough issues, and bring the right people and capabilities together to transform systems for better health outcomes. As a bold organization of innovative thinkers and doers, we are particularly proud to have earned a reputation as a national leader for improving the health and well-being of children and their families. National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) works with four regional teams from across the country to increase the number of providers treating persons for sickle cell disease (SCD) or sickle cell related issues, increase the number of providers prescribing disease modifying therapies, such as hydroxyurea, and increase the number of patients receiving regular care from providers knowledgeable about treating SCD. Partnerships include sickle cell treatment centers, federally qualified health centers, community based organizations, parents and patients. Official website

The Section of Pediatric Hematology/Oncology cares for infants, children, and adolescents diagnosed with blood disorders and malignant diseases. The Section is dedicated to addressing all issues involved in caring for these patients in a comprehensive manner. The primary nonmalignant disorders include patients with Sickle Cell Anemia, Thalassemia, bleeding and other blood clotting diseases, and patients with platelet dysfunctions. The Pediatric Comprehensive Hemoglobinopathy Clinic is a State of California center-designated program and provides expertise for children with red blood cell disorders. Currently, the clinic serves 150 children and adolescents from the Sacramento and Northern California areas. While most of these children have been diagnosed with Sickle Cell Anemia, approximately 40 have thalassemia disorders, which is particularly common amongst the Southeast Asian population. Children with blood clotting disorders are cared for in the state center-designated Hemophilia Program. The program is dedicated to the evaluation and care of children and adolescents, as well as clinical research related to all aspects of hemophilia. The Center currently serves about 300 patients. Official website