Getting the right support for sickle cell disease (SCD) can make day-to-day care easier. Depending on where you live, help may be available for finding specialists, paying for care, getting to appointments, understanding insurance, and connecting with others who understand the condition.

Organizations across the Southeast and Texas offer resources that may help. The programs below provide support with healthcare, financial needs, transportation, education, and other parts of everyday life with SCD.

Sickle Cell Disease Association of America Chapters

The Sickle Cell Disease Association of America (SCDAA) is a national nonprofit that supports people affected by sickle cell disease through education, advocacy, and access to helpful resources.

SCDAA works with member organizations throughout the country, including groups in the Southeast and Texas. The services available may differ by location.

On the map above, there are numerous SCDAA member organizations listed, including ones in:

Resources Available Through the SCDAA

Although resources vary by location, here are a few types of support the SCDAA may provide:

Reach out to your local chapter to find out what they offer.

Sickle Cell Resources in Texas

For people living in Texas, a variety of resources can provide support for living with sickle cell disease.

Sickle Cell Association of Texas Marc Thomas Foundation

The Marc Thomas Foundation is one of the major organizations where people can get support for sickle cell disease in Texas. This foundation is headquartered in Austin, but also has offices in Houston, San Antonio, and Dallas. If you’re looking for SCD resources and support in Texas, reaching out to them is a great way to get started.

Here are some ways they can provide support:

Supporting Our Sicklers

Supporting Our Sicklers (SOS) is an organization that primarily serves parents and caregivers of children living with SCD. Their goal is to help caregivers connect with each other and learn about sickle cell, so they can better support those they’re caring for.

Here are some of the ways they provide support:

Sickle Cell Resources in the Southeast

Some organizations located in the Southeast may be able to provide SCD support and resources.

MTS Sickle Cell Foundation

Based in Georgia, this organization does a lot of fundraising events for sickle cell. They also offer scholarships for people affected by the condition, as well as Thanksgiving grants to help families afford a feast.

They have a Patient Assistance Program that offers financial assistance, transportation, and travel assistance to people participating in clinical trials related to sickle cell.

Etta Pete Sickle Cell Anemia Foundation

The Etta Pete Sickle Cell Anemia Foundation is based in Lake Charles, Louisiana. They offer scholarships and a monthly in-person support group at Huber Park.

They also help people with sickle cell to network with each other and connect to the medical resources they need.

Mississippi Sickle Cell Foundation

In Mississippi, this foundation holds a large number of events to educate people about sickle cell disease and raise money for research. They also have a monthly support group, a camp for children with sickle cell disease, and an annual retreat for teens.

Sickle Cell Partners of the Carolinas

Sickle Cell Partners of the Carolinas organizes a lot of fundraising events for sickle cell research, with annual golf tournaments and a Turkey Trot on Thanksgiving. Their goal is to raise awareness about SCD in the medical community, schools, and the broader community.

The Sickle Cell Foundation of Tennessee

Every summer, the Sickle Cell Foundation of Tennessee hosts a Sickle Cell Kids Camp in Scottsville, Kentucky, for kids diagnosed with SCD.

This camp brings kids together in a safe environment to participate in activities like horseback riding, crafts, games, and fishing. Medical professionals are able to provide care on site, if needed.

The foundation also offers a digital caregiver support toolkit developed based on the needs of sickle cell caregivers. It contains information about mental health and self-care, burnout, transitioning to adulthood, the role of faith in caregiving, and digital tools.

Additionally, there are resources to help people with housing, transportation, utilities, and more.

Sickle Cell Foundation of the River Region

This organization in Montgomery, Alabama, offers a number of services, including:

They also offer a variety of medical resources to help educate families and community members about SCD.

Medicaid and Medicare

Medicaid and Medicare may also help cover some of the costs of sickle cell care, including doctor visits, hospital care, medications, and other services.

Medicaid coverage varies by state. If you live in the Southeast or Texas, check your state Medicaid program to see what sickle cell services, transportation assistance, or other support may be available. In Texas, Medicaid will likely cover transportation to doctor appointments and pharmacies to pick up prescriptions.

Call your Medicaid or Medicare plan to ask what services are covered in your area.