A place where you can go to get support because sometimes it is hard to find. This is also a group where people can be informed and aware about Sickle Cell Anemia Disease
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Launched in May 2014, Sickle Cell Alliance Foundation is a passionate non-profit, community-based organization. It is committed to being a valuable resource to guide and help families and patients - children, teens and adults - living with the life-threatening sickle cell disease. It's goal is to ensure the appropriate programs and needed resources are available and offered to the patient and caregiver.
Through the strong connection with the families, Sickle Cell Alliance Foundation will be “their voice”. This will help as they advocate, partner and develop relationships with hospitals, schools, companies and public officials. This will help to heighten awareness and raise the much-needed funding to educate at the local and national levels to improve care.
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Sickle cell Improvement across the NorthEast ReGion through Education (SiNERGe) is a multi-state collaborative dedicated to improving care for individuals with sickle cell disease throughout the Northeastern United States, Puerto Rico, and the U.S. Virgin Islands funded by the Health Resources and Services Administration through the Sickle Cell Disease Treatment Demonstration Program. SiNERGe includes sickle cell providers in DC, Delaware, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia, Puerto Rico, and the US Virgin Islands. Together SiNERGe members are working to:
-Increase the number of providers that treat sickle cell patients.
-Increase the number of providers prescribing hydroxyurea.
-Increase the number of sickle cell patients that are receiving care from providers with greater knowledge of how to treat SCD.
Official website
The Foundation for Sickle Cell Disease Research is a comprehensive, non-profit organization that provides a platform for researchers, healthcare providers, and those living with sickle cell disease. Working collaboratively with academia, pharmaceutical, biotechnology and community organizations, the best practices are identified to help with the management and future care for sickle cell patients.
FSCDR was founded by Dr. Lanetta Bronté-Hall in December 2012 after working closely with the sickle cell community and noticing the extreme lack of care for a disease that affects 3 million people nationwide. Dr. Bronté-Hall serves as principal investigator on grants and industry-sponsored trials in sickle cell disease.
As of February 2015, FSCDR opened the Sickle Cell Care and Research Network, the nation’s first standalone outpatient center completely devoted to sickle cell care and services. This is historically significant, as the South Florida community has one of the nation’s highest numbers of individuals affected by sickle cell, but not yet had a center specifically made for sickle cell treatment.
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The Sickle Cell Disease Association of Canada/L’Association D’Anémie Falciforme Du Canada (SCDAC/AAFC), established in 2012, is committed to increasing awareness about Sickle Cell Disease (SCD), enhancing methods of identification, diagnosis, and treatment toward improving the quality of life of affected individuals and their families. The SCDAC/AAFC supports the development and growth of member organizations across Canada and facilitate the collaborative efforts of member organizations.
The SCDAC/AAFC also encourages the establishment of coordinated clinical services and research initiatives that will support SCD treatments and efforts toward a cure. They believe that attracting clinical and research expertise to undertake and further the study of SCD research in Canadian universities and healthcare settings is essential, and support these initiatives.
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Community Health Interventions and Sickle Cell Agency, Inc., (CHISCA, Inc) is an nonprofit 501(c)3 “Umbrella” organization with a focus on the care, prevention and education of individuals and families affected by Sickle cell disease, HIV/STD’s, Diabetes and other health disparities.
CHISCA is dedicated to addressing various health related challenges that significantly affect our community’s health and wellness. In conjunction with our health and human service initiatives, CHI will provide education, prevention, and implement & support documented best practices for interventions, services, and treatment in our efforts to eliminate health disparities.
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Candice’s Sickle Cell Fund, Inc. (CSCF, Inc.) was Incorporated in December of 2000. By establishing Candice’s Sickle Cell Fund, we are dedicated to improving services to those who suffer from sickle cell disease.
Aims & Objectives:
-Raise awareness of this disease in the Afro-American, Latino, Caribbean and Mediterranean communities.
-Host at least one significant annual event in order to raise funds and grant at least three scholarships annually to students with Sickle Cell Disease.
-Provide annual donation to support Sickle Cell research.
-Participate, collaborate and deliver a range of small community-based events each year to benefit those suffering from Sickle Cell Disease.
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