Sickle Cell Disease Foundations and Nonprofits: Where to Find Support and Resources

Living with sickle cell disease often means needing more than just medical care -- practical support, community, and advocacy matter too. Here's an overview of the kinds of organizations that can help, and what to look for.

What Sickle Cell Foundations Typically Offer

National and local sickle cell foundations generally provide some combination of: patient and family education, financial assistance programs (for things like transportation to appointments or emergency needs), peer support and community events, advocacy for research funding and policy, and directories of specialized sickle cell clinics and providers.

Well-Known National Organizations

The Sickle Cell Disease Association of America (SCDAA) is one of the longest-running national organizations focused specifically on sickle cell disease, with local chapters in many states offering community programs and support. The American Society of Hematology (ASH) maintains clinical resources and supports sickle cell research funding. The Centers for Disease Control and Prevention (CDC) also maintains a public sickle cell disease program with educational materials and data on the condition nationally.

Many communities also have local or regional sickle cell foundations, often affiliated with a children's hospital, academic medical center, or community health organization -- your sickle cell clinic or hematologist's office is often the fastest way to find out what's available near you.

What to Look For

When evaluating a foundation or support organization, it can help to check: how long they've been established, whether they're transparent about how donations are used, whether they offer the specific kind of support you need (financial, educational, peer support), and whether they're affiliated with or recommended by your care team or a recognized national organization.

Frequently Asked Questions

Are sickle cell foundations free to use?

Most educational resources, support groups, and advocacy programs from established nonprofits are free. Some financial assistance programs have specific eligibility requirements, so it's worth reaching out directly to ask.

How do I find a local sickle cell foundation?

Ask your hematologist or sickle cell clinic for a referral, search for your state name plus "sickle cell foundation" or "sickle cell association," or check whether a nearby children's hospital or academic medical center has an affiliated program.

Can foundations help with the cost of treatment?

Some offer financial assistance programs, though availability and eligibility vary widely. It's worth asking your care team's social worker as well, since many hospitals have their own patient assistance resources.

A Wellness Complement to Your Care Plan

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This article is for educational purposes only and is not medical advice or an endorsement of any specific organization. Please verify current programs and services directly with each organization.