Powered By
Share the name of the organization and/or the type of support.
Continue with Facebook
Continue with Email
You'll also get the latest articles directly to your inbox.
Sickle cell disease (SCD) resources can make a real difference. Managing this condition often means juggling specialist care, financial hurdles, insurance headaches, and getting to appointments.
A lot of resources are available to help you get the everyday support you need while living with sickle cell disease. Here are a few options available to people living in the Northeast and Midwest in the United States.
The Sickle Cell Disease Association of America (SCDAA) is a national organization dedicated to advocacy and education for sickle cell disease. It offers a variety of resources related to mental health, access to care, clinical trials, financial support, and more.
The SCDAA has member organizations across the United States, including in the Midwest and Northeast. Resources can vary depending on your local member organization. You can use the SCDAA Member Finder tool to find out if there’s one in your state.
Here are some of the SCDAA member organizations located in the Midwest and Northeast.
The Sickle Cell Disease Association of Illinois offers virtual support groups for people with SCD. The association’s general support group meets every month on a Thursday. They offer an all-male support group that typically meets on a Tuesday.
This organization also has a messaging-based support group for adults via an app called GroupMe.
The Sickle Cell Disease Association of Michigan provides the following services:
While this association does not directly offer financial resources, they have connections in the community to resources that may help with food, housing, clothing, education, and phone and internet services. They can connect you directly or you can use the resources on their website to find out what aid is available.
The Sickle Cell Foundation of Minnesota offers support based on donations and grant funding. When they’re able, they offer financial support to children and adults with sickle cell disease.
They also offer support groups called empowerment circles for people with SCD and loved ones who are older than 16. In these support groups, you can meet other people in the SCD community, share your own story, and get insights that may help you live better.
These groups meet at 6:30 p.m. Central time on the last Thursday of each month.
The Martin Center supports people living with sickle cell disease in Indianapolis.
They can provide help with food and transportation, emergency financial needs, and scholarships for people with sickle cell disease who want to pursue higher education. The Martin Center also organizes monthly support groups for people with SCD and their loved ones.
If you live in the area and want to request help, start by filling out this application.
In addition to advocating for people living with sickle cell disease, the Maryland Sickle Cell Disease Association offers:
This organization also hosts monthly support meetings for people with SCD and caregivers on the fourth Thursday of each month. You can fill out their contact form if you’re interested in attending.
The Massachusetts Sickle Cell Association is largely an advocacy group, but they also provide education and counseling for people affected by sickle cell disease. Other resources they offer include:
Pennsylvania has three community-based organizations that provide support throughout the entire state. These organizations work together to help people access care and find education, employment, and emotional support. They also support families and caregivers.
The three organizations that make up the Sickle Cell Disease Community-Based Services and Support Program in Pennsylvania are:
Resources may include family support programs (including a parent support group and an adult support group), educational support programs, and assistance with transitioning to adulthood.
The Children’s Sickle Cell Foundation also has a handbook on their site for new parents of a child with SCD.
Here are additional SCDAA member organizations in the Midwest and Northeast that can provide resources and support for SCD:
There are a variety of sickle cell resources specific to the Midwest and Northeast.
Although the Uriel E. Owens Sickle Cell Disease Association of the Midwest is located in Kansas City, Kansas, it focuses on helping people with sickle cell throughout the entire Midwest.
The organization offers a variety of resources, including emergency financial assistance. This can help pay for prescriptions, utilities, and food. In order to qualify for this assistance, you’ll have to show medical documentation of sickle cell disease.
This organization also offers scholarships and resources for students living with sickle cell, as well as events where you can meet other people living with SCD.
The Crescent Foundation: A Sickle Cell Initiative provides services in the Philadelphia and the Delaware Valley area. They offer support with:
The Caleb Duplan Foundation focuses on assisting those with sickle cell disease who live in Rhode Island. They offer free transportation, help with housing, case management, and financial support.
The Sickle Cell Association of the National Capital Area is based in the Washington, D.C., area and offers support groups, counseling, workshops, financial assistance, and educational resources. They also have a scholarship program that awards $500 to a student living with SCD in the Washington, D.C., area.
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 Midwest or Northeast, check your state Medicaid program to see what sickle cell services, transportation assistance, or other support may be available. For instance, LogistiCare is a Medicaid program in St. Louis that provides transportation to and from appointments.
Call your Medicaid or Medicare plan to ask what services are covered in your area.
If you need care, support, or financial help because you or someone you care for is living with sickle cell disease, talk to a healthcare provider. They will likely be more familiar with the resources that are available in your area. They may also know people who work in these organizations, so you could get a personal referral for help.
You'll also get the latest articles directly to your inbox.
Get updates directly to your inbox.
Continue with Facebook
Continue with Email
Continue with Facebook
Continue with Email
Become a member to get even more
Join
Your Privacy Choices
