The purpose of this program is to increase access to sickle cell resources and services in the state of Florida. Each month we highlight a different sickle cell organization, clinic/hospital, or resource to meet this goal and provide opportunities for community members to take more active roles in supporting sickle cell patients and families.
The organizations below have been monthly spotlights and are listed in alphabetical order. A new organization will be added to this page each month as we highlight more and more organizations doing important work for Florida’s sickle cell patients and families.
If you work with or are aware of a sickle cell organization, clinic, or hospital program in the State of Florida, please click the link below so that we can add them to this page and help Florida’s sickle cell community find them easier.
Sickle Cell FL Resources
Advancing Sickle Cell Awareness Project, Inc.-
Miami, FL
Summary:
Established in 2015 as a nonprofit organization with a mission to “change the narrative” around the challenges associated with Sickle Cell Disease, A.S.A.P. works to raise awareness, educate the community, and successfully advocate on behalf of SCD warriors suffering from this debilitating condition. Team A.S.A.P. is composed of sickle cell warriors, sickle cell trait carriers, caregivers, and those who have a passion to see a change within the sickle cell community.
Services:
Educational workshops and seminars, health fairs, community engagement events, an annual mother's/caregivers brunch, an annual community picnic and resources fair, an annual mind, body & soul education and wellness forum, and building healthy connections between the medical community. ASAP also has 3 monthly virtual support groups for adults, teens, and young children. The COPE Program for caregivers and warriors to "cope" with the stressors of this disease through advocacy 101, mindfulness, art therapy, and music therapy, and other resources to help equip and empower the family as a whole.
Hands of Hope Sickle Cell Awareness Foundation, Inc.- Tampa, FL
Summary:
To provide opportunities for young people and their families to reach their full potential and instill confidence to make healthy choices. While our focus is to keep families aware of Sickle Cell/Sickle Cell Trait and the importance of making great choices, we believe that the most effective way to do this is by addressing the root causes through education.
Services:
Sickle Cell/Trait Screening | Counseling | CRP Training | Notary Services Support Group Meeting Free To The Community.
Kids Conquering Sickle Cell Disease Foundation, Inc.-Orlando, FL
Summary:
Our mission is to dedicate with compassion to provide education, awareness, advocacy, and outreach to improve the quality of life for individuals and families living with sickle cell disease and other blood disorders. KCSCDF has answered the call of a need in the community by providing support services & producing educational programs to educate the community. We have printed educational literature about sickle cell disease and sickle cell trait. We have educated over 5000 individuals within the local community of Central Florida & beyond through our educational conferences & lectures. Our education program has focused on children’s health, caregivers, and includes two programs focused on transitioning adults. We have trained patients living with sickle cell disease within our Empowered to Transition Program and Young Adult Sickle Cell Alliance Program. We train managed health care management, post high school management skills, and provide educational support. We also provide training understanding legislative advocacy and joining rare disease initiatives. KCSCD has built partnerships with national rare disease organizations. local organizations and lead pharmaceutical companies to join our mission of support.
Services:
Our services include programs that focus on Awareness, Education, & Support Services.
Sickle Cell Foundation, Inc.- Tallahassee, FL
Summary:
The Sickle Cell Foundation, Inc. was organized on February 21, 1980 at the office of the Tallahassee Urban League. Upon installation of the newly organized foundation, an official charter was issued and later received nonprofit organization 501(c)(3) exempt status. There are sixteen (16) chapters in the State of Florida. The Sickle Cell Foundation, Inc. is the only local agency serving District II providing services to the following counties: Leon, Jefferson, Wakulla, Madison, Taylor, Gadsden, and Jackson counties. Our mission is to enable individuals with sickle cell anemia to live lives to the extent possible unhampered and uncompromised by their sickle cell conditions. We hope to increase the knowledge and understanding of sickle cell disease as a health problem through professional standards of administration, health care, public relations and fundraising.
Services:
-Client Advocacy
-Public education: We seek to make everyone aware of sickle cell anemia, its cause, and its impact on our clients, families, and the entire community. To have everyone know the difference between sickle cell trait and sickle cell anemia and to teach our communities how the sickling gene is detected and who should have a sickle cell test. We were concerned because so much of what the public heard and read about sickle cell conditions was inaccurate, misleading, and unduly alarming. There was very little information to help clients and families to understand sickle cell disease. Nothing was being done to motivate people of childbearing age (15 to forty-four) to voluntarily seek sickle cell testing. Influential people in our community, who touched the lives of patients, were not sufficiently knowledgeable about sickle cell conditions and the services that clients might need.
-Peer support groups: We establish an environment in which clients are free to explore their feelings and personal problems related to sickle cell disease with others who have a unique understanding of the issues. To provide a forum in which clients can give and receive support from their peers. We provide free sickle cell screenings for everyone interested in knowing their hemoglobin status; to identify persons of childbearing age who have sickle cell trait and provide them with an opportunity to obtain detailed and accurate information which will enable them to make informed decisions that they believe are in their best interest regarding family planning.
-Financial Assistance: We provide limited financial assistance with the following utilities: utilities or gas, rent, food, prescription medications, gas mileage, and children’s clothing. The client must have a financial need and meet the income eligibility criteria to qualify for assistance.
-Transportation: We provide transportation for sickle cell-related doctor and emergency room visits for clients who have no other means of transportation since sickle cell clients are often unable to attend doctor’s appointments or get to the emergency room when painful episodes occur or after heavy medications.
Vocational Rehabilitation (Florida Department of Education)
Summary:
At Vocational Rehabilitation, our mission is to help people with disabilities find and maintain employment and enhance their independence. Our vision is to become the first place people with disabilities turn when seeking employment and a top resource for employers in need of qualified employees.
Services:
A few services that we provide to assist participants with employment include career guidance and counseling, diagnostics and evaluations, family member services, interpreter services, job related services, maintenance, occupational expenses, personal assistance services, physical or mental restoration, training and technical assistance. We partner with vendors that also assist with the delivery of these services.
It is important to note that our services start at age 14 and any person applying for services, must be deemed eligible before receiving services from vocational rehabilitation. We have 7 Area offices and several unit offices throughout the state of Florida; so depending on where an individual seeking services is located, that will determine the point of contact.