The Tulane University Sickle Cell Center of Southern Louisiana team is comprised of a nurse practitioner and nurse coordinator, a hematologist, a pain management physician and a social worker. With a team that is highly educated in sickle cell care, they can deliver better and more comprehensive care. The adult sickle cell clinic provides comprehensive care to adults with sickle cell disease. This includes a comprehensive medical exam, laboratory evaluations, psycho-social evaluation and support, and focused education and teaching. Visits are scheduled every 3 to 6 months. The clinic focuses on explaining sickle cell disease and its complications. They focus on recognizing and avoiding future medical problems. Additionally, they provide education about new medical research and treatments in the field. The pediatric sickle cell clinic is for patients from birth until early adulthood. They provide care in a comprehensive setting that includes a specialized sickle cell nurse and a sickle cell social worker. The focus of this clinic is on sickle cell disease treatment as well as on education and teaching both the patients and their parents. The Sickle Cell Transitional Program is designed to help adolescents and young adults learn more about managing their sickle cell disease as well as improve their medical care. It consists of a comprehensive sickle cell team that provides special education and psychosocial support for patients as they transition from pediatric to adult care. The sickle cell program is designed for anyone between the ages of 16-25 who is referred by their primary hematologist. They prefer our patients attend this program before they transfer care to an adult program. This will be evaluated on an individual case basis. Official website

The mission of the Sickle Cell Program at Cohen Children’s Medical Center is to provide individualized, preventive medical and psychological care to children with sickle cell disease from birth to 21 years of age. Education and counseling are an integral part of each clinic visit. Care is coordinated by a pediatric specialist and a pediatric hematologist to ensure the highest quality care possible. Care emphasizes prevention but requires constant monitoring and care of complications resulting from the abnormal hemoglobin. The Sickle Cell Program at Cohen Children’s Medical Center includes: -Comprehensive care by pediatric hematologists and specialized nurse practitioners -A specialized high-risk clinic -Family education -Access to a pediatric pain specialist (inpatient and outpatient) -Access to national clinical trials -A summer camp program (where your child can spend some quality time just being a kid) Official website

Incorporated in 1979, the Ohio Sickle Cell and Health Association was established from the need to provide a payment mechanism for adults with Sickle Cell Disease who were medically indigent; with the focus, and intent to solve Sickle Cell Disease, in the context of broader, societal issues, facing Ohio’s children, minorities and poor. Our services include: -Education -Testing -Counseling -Support -Referral -Advocacy Mission: To provide Education, Advocacy and Support to persons and families affected and at-risk for Sickle Cell Disease through effective approaches to Sickle Cell Services. Purpose and Objectives: -To have a stake in and be concerned about health problems as they relate to underserved population in Ohio -To serve as coordinating body for Sickle Cell Trait, Sickle Cell Disease and other health activities across the state of Ohio -To serve as a resource base for Sickle Cell Programs and health Organizations -To develop support for affected individuals and families -To educate and inform the professional and lay communities about the Sickle Cell Phenomena and other health issues Official website

In October 1992, sickle cell patients, Camille Daley and Morette Wright, made the decision to start the Sickle Cell Support Club of Jamaica. After over two decades of providing support to persons with sickle cell disease, lobbying for improved benefits and raising public awareness, this non-profit, voluntary organisation was relaunched as the Sickle Cell Support Foundation of Jamaica (SCSFJ) in April 2015. Objectives: -Provide social and emotional support to patients and families affected by sickle cell disease and share information and coping strategies to empower individuals to manage the disorder effectively. -Heighten awareness of the various sickle cell disorders which exist through public education programs and to dispel the many prevailing myths and misconceptions which surround the illness. -Act as a public advocate on behalf of individuals affected by sickle cell disease. -Foster and support personal development and self-actualization of sickle cell patients with assistance through grants for remedial education, skills training and micro-entrepreneurial ventures. -Provide limited assistance with medical expenses to needy sickle cell patients. -Establish links and exchange information, ideas and strategies with regional and international sickle cell organizations. Official website

The Sickle In Me is a Charitable, not-for profit Organization that carries out its mission and goals with the help of its wonderful volunteers. Volunteering is the backbone of The Sickle In Me and of paramount importance to its success. ​ Mission: To Educate, Motivate and Empower those directly and indirectly moved by the impact Sickle Cell Disease can have on a person's life. Giving them the right information -- encouraging them to get involved in SCD awareness programs. Through a collaborative process, we will increase our connection, changing the public face(s) of Sickle Cell Disease, forever. Vision: Support all warriors, fighters, angels, friends and family of those who are diagnosed. We want to share the information to help make their fight more understood and supported. Official website

People with inherited blood disorders require ongoing care and support. At the UPMC Adult Sickle Cell Disease Program in Pittsburgh, we treat people over the age of 21 who have sickle cell disease or thalassemia. Our goal is to help our patients manage their disease and improve their quality of life. Our dedicated health care team has expertise in managing the complex genetic blood diseases. We customize your treatment to fit your needs, providing: -Ongoing medical management -Periodic medical follow-up visits -Preventive therapies -Support services And, because many people with adult sickle cell disease develop pulmonary hypertension (PH), we offer access to the UPMC Pulmonary Hypertension Program. It's one of only a few PH programs in the nation that combines the knowledge of both pulmonary and cardiology experts. This means you receive complete PH treatment for this dangerous complication of sickle cell disease. Official website

UT Southwestern Medical Center is a leader in genetics research and the treatment of genetic disorders. Their Division of Clinical Genetics provides clinical genetics services to adult patients with genetic disorders. Members of the division are joint faculty in the McDermott Center for Human Growth and Development/Center for Human Genetics, where the goal is to foster excellence in human genetics and genomics. Their Pediatric Genetics and Metabolism Division offers consultation, evaluation, counseling, and treatment for inherited diseases and known or suspected genetic conditions to pediatric patients at Children’s Medical Center under the direction of Mary Ester Carlin, M.D. Official website

In July 2013, Uganda Sickle Cell Rescue Foundation (USCRF) was established as a not-for-profit Organization with the purpose of having communities aware of sickle cell disease and its social connotations; improving the economic empowerment of people living and affected by sickle cell disease, and minimizing stigmatization in Uganda. The Uganda Sickle Cell Rescue Foundation was set up as an effort of Dr. Bulaimu Muwanga Kibirige of BMK Group and Major Lukiah Mulumba of USA Air force. These were later joined by Mr. Nsubuga Erostus of AGT Group and Dr. Sikander Lalani of Roofings Group. The Technical team is comprised of Prof. Christopher Ndugwa, a Sickle Cell expert, Dr. Lawrence Kaggwa, a Senior Consultant surgeon, and Sister Annet Namirembe, the Matron of Nsambya Hospital. These constitute part of the Board of Directors.   With the support from Hotel Africana, AGT Group, Roofings Group and other well wishers; the Uganda Sickle Cell Rescue Foundation has championed the fight against sickle cell disease making sure that it is no longer a neglected condition. Uganda Sickle Cell Rescue Foundation now wishes to strengthen its awareness and testing program to benefit the youth. Official website

The KIS Foundation was founded in 2006 at the urging of many friends and SCD Advocates that Ms. Shepard met over a 17 year period of Raising Awareness of Sickle Cell Disease. At the end of 2006, after celebrating the success of the poster child, Paizley Jenkins, being declared cured of Sickle Cell Disease from a bone-marrow transplant surgery, Ms. Shepard’s friends and ardent supporters began the task of helping her to establish her own foundation.   In 2016, The KIS Foundation successfully launched two of its newest community service programs. The “Crisis Care Package” is a Response-Aid Kit/Package for Sickle Cell Disease patients who have been admitted to the hospital because of a Sickle Cell Crisis. The “CATCH-UP Plan” Tutorial Program is designed to bridge the gap between general instruction in the classroom and detailed independent learning because of unexpected absences. It is a two week dedicated tutoring program created for Sickle Cell Disease patients from grades Pre-K to 12, that supports students after emerging from an in-hospital crises stay. Both programs are available to SCD patients at no cost. The KIS Foundation, Inc., is dedicated to improving the health and quality of life for children, adults, and families living with Sickle Cell Disease because “sickness has no boundaries and compassion has no limits.” Official website

The New England Sickle Cell Institute at UConn Health is a regional Adult Sickle Cell Center. It is dedicated to providing quality patient care to adults living with sickle cell disease with a focus on research, education and advocacy. Making choices about your treatment can sometimes be difficult and you want to make sure you receive the best of care. As a patient at the New England Sickle Cell Institute, we provide full comprehensive sickle cell care that focuses on prevention as well as acute care. You will have access to a team of expert hematologists, pain management specialists, nurse practitioners, nurses, social workers, researchers, and a patient navigator that can assist you with the medical and emotional aspects of sickle cell disease. You are a team member in developing your plan of care. Our Center offers simple care and exchange blood transfusions. We are the only site in the region to offer erythrocytapheresis. Other services include: -Diagnosis of sickle cell disease, thalassemia, and other hemoglobinopathies -Ongoing ambulatory care and treatment for patients with sickle cell disease -Same day pain episode management utilizing a day hospital strategy -Preventative health -Individualized emergency room pain management plan -Management of pain, iron overload and other sickle cell related complications Official website