The Sickle Cell Disease Association of America, Philadelphia / Delaware Valley Chapter (SCDAA/PDVC) is a non-profit psychosocial, social service and advocacy agency established in 1982. SCDAA/PDVC provides resources and assistance to children, adolescents, and families affected by sickle cell disease and sickle cell trait in Philadelphia and the counties of Berks, Bucks, Carbon, Chester, Delaware, Lackawanna, Lancaster, Lehigh, Luzerne, Monroe, Montgomery, Northampton, Pike, Schuylkill, Susquehanna, Wayne and Wyoming. The mission of SCDAA/PDVC is to serve as a vehicle and resource center for the psychosocial and social service needs of children, adolescents, adults and families affected by sickle cell disease. SCDAA/PDVC seeks to develop, manage and allocate resources in partnership with hospitals, charitable organizations community based organizations and social service agencies. Official website

With its current population at 167 million, Nigeria is the most populous African country. It has the highest sickle cell disease (SCD) burden in the world with ~19 of 1000 births affected with the disease. Although there have been several SCD associations and other non-governmental organizations devoted to the disease, a concerted truly national advocacy group had been lacking. At the global SCD congress in Accra in July 2010, the Nigerian delegates met and decided to launch the Nigerian Sickle Cell Disease Network, bringing together Nigerian doctors, scientists, NGOs and patients with interest in the disease, both within the country and in the Diaspora. The Sickle Cell Support Society of Nigeria has made progress in advocacy for the control of sickle cell disease, building collaborations for scientific research, establishing guidelines for uniform management of patients with the disease at primary, secondary, and tertiary health care levels. This has been done by working closely with the government, professional groups both within the country and in Diaspora.These are indeed very exciting times in the field of SCD in Nigeria. We need to expand the activities of the network and we seek more international partnerships. Official website

The Sickle Cell Disease Coalition (SCDC) was formed to amplify the voice of the sickle cell disease (SCD) stakeholder community to improve outcomes for individuals with SCD. Its membership includes public health, research, and provider organizations, patient groups, faith-based organizations, federal agencies, industry representatives, and foundations. The future of care for SCD patients will be dependent on advanced and highly targeted approaches to research, discovery, and implementation of proven and new interventions. To ensure that patients with SCD receive state-of-the-art care, there is a need for the SCD stakeholder community to use multi-disciplinary and coordinated efforts to produce the greatest impact. A multi-agency approach would deliver advances faster, more economically, and more efficiently to patients suffering from this debilitating disease in the United States and around the world. That's what for the SCDC is committed. Official website

The Sickle Cell Association of the National Capital Area, Inc. (SCANCA, Inc.) is a community-based organization serving the District of Columbia, Montgomery and Prince Georges Counties, and Northern Virginia. Our focus is to educate individuals about the management of sickle cell disease. Our education programs include workshops, health fairs, client support groups and publications that inform the community, including health and social professionals about sickle cell disease. Our client support programs include counseling, referrals and advocacy for individuals with sickle cell disease and their families. We partner with community organizations in the area to provide medical and social resources for our clients, and assist in research about sickle cell disease. The mission of the SCANCA, INC. is to provide programs that educate the National Capital Area community about sickle cell disease, and to utilize effective resources that benefit the lives of individuals with sickle cell disease, their families and their communities. Our goals are to: -Further education and research in sickle cell disease -Promote community awareness of sickle cell disease -Promote and enhance educational and other opportunities for individuals with sickle cell disease -Provide a nonpartisan platform arena for major issues of local significance -Be a community advocate for those with sickle cell disease and their families Official website

The Sickle Cell Association of Quebec is dedicated to educating families and promoting a social change. They are trailblazers in their quest to improve the quality of life for children who suffer from sickle cell anemia. They strive to help alleviate the burden this condition places on families. Through their expertise and close ties to the families they work with, the association is in a privileged position to promote: a customized service plan that is adapted to the reality of families; adjustments to family organization in response to customized service plans; the best use of service plan resources available including family, health care and community services. The mission of the Sickle Cell Anemia Association of Quebec (SCAQ) is to provide much-needed support to the children and families who suffer from this serious genetic blood disorder. The association is constantly striving to bring awareness to the general public and decision makers in order to improve medical care for patients. Official website

The Greater Boston Sickle Cell Disease Association, Inc. is a federally approved 501(c) 3, local non-profit organization dedicated to advocating for and providing support services to patients and families facing the challenges associated with this incurable disease. The goal is to give persons living with SCD a chance to live healthier and more productive lives, and to promote awareness about SCD. The organization was founded in 1995 by Reverend Ronald Stephenson, who was moved to do something about the lack of sickle cell awareness and support services for families affected by SCD in our region. His motivation to form the group was kindled by the comments of an acutely ill patient with SCD, who informed him that her biggest problem and that of many patients with SCD was that “no one seemed to care.” As a way of showing patients with SCD that some people do care, the GBSCDA was formed with the participation and support of a small group of patients, their family members, and health care workers at Brigham & Women’s Hospital and Boston Medical Center. The mission of the organization at that time was to promote awareness of SCD and to provide limited support services for all patients with SCD in our region free of charge. A volunteer run organization, GBSCDA’s membership is comprised of lay persons as well as medical and allied health professionals. The primary source of our funding is from donations and fundraising events. Official website

Sickle Cell Association of BC is a non-profit organization committed to helping those with Sickle Cell Disease, their family, friends, and healthcare providers within BC, Canada. Adobie McAllister's (Co-founder of Sickle Cell Association of BC) daughter has Sickle Cell Disease and is an advocate of integrative and alternative methods of treating Sickle Cell Disease and is a representative for the Strategic Advisory Group for the BC Inherited Bleeding and Red Cell Disorders Provincial Program. Adobie lives and works in Vancouver, BC and is working on a Sickle Cell binder for patients with Sickle Cell. The Sickle Cell Association of BC is always looking for volunteers / knowledge philanthropists interested in project oriented, time specific (short term or long term) activities, especially volunteers in the following areas: 1. Fundraising 2. Accounting 3. Legal 4. Human Resources / Volunteer Recruitment, Training and Orientation 5. Transportation 6. Doctors, nurses, natropaths, osteopaths, herbalists, acupuncturists, acupressurists, etc. 7. Therapists: massage, physiotherapy, counselors / psychologists / psychiatrists / cranial sacral / chiropractors / reflexology / etc. 8. Coaching and Mentoring 9. Governance and Policy 10. Canvassers 11. Communications 12. Technical and Web Support 13. Conference Planning 14. Event Coordination Official website

The Croydon Sickle Cell and Thalassaemia Support Group is a registered charity based in Croydon, London in the county of Surrey. Our members include individuals affected with Sickle Cell and Thalassaemia, their families, carers, supporters and professionals. In 1998, the Sickle cell centre was opened for the specialist nurses. Our support group moved in with the nurses and since that time it has built up a very good working relationship and has gained an outstanding reputation with the borough. Our support group became a Registered Charitable organisation in September 2003. The main aim of our efforts is to help improve the quality of life for affected individuals, their families and carers. We also promote awareness of sickle cell and thalassaemia in the community. There are a number of fundraising events to raise funds for our activities with both the young and older affected individuals. Our group has consistently strove to achieve and remain focused on the objectives set out in our constitution. 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, they 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.   Services Offered: -Simple and exchange blood transfusions -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 -We offer expertise in the management of: Chronic pain, Iron overload, Priapism, Retinopathy, Chronic ulcers, Nephropathy, Pulmonary hypertension, and Other complications Official website

The Sickle Cell Data Collection (SCDC) program collects health information about people with sickle cell disease (SCD) to study long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. The program will help inform policy and healthcare standards that improve and extend the lives of people with SCD. Early screening, diagnosis, and treatment have allowed people with SCD to live much longer, making now a more important time than ever to study SCD health across the life course. The SCDC program strives to improve health outcomes for people with SCD. By documenting health information of patients with SCD in the United States over time, the program can identify critical gaps in diagnosis, treatment, and healthcare access for people with SCD. Official website