Grants for Sickle Cell Organizations 2026: 53 Funders

Sickle cell source review, Grantsights, November 1, 2026: Grantsights checked the federal statute at 42 U.S.C. 300b-5 (opens in a new tab), HRSA's Sickle Cell Disease Programs page (opens in a new tab), CDC's Sickle Cell Data Collection program page (opens in a new tab) and the IRS page about Form 990-PF (opens in a new tab), then compared them against foundation filings. Where official sources stop: none of them funds a community group's operating budget directly or tells a foundation to say yes. Those calls belong to grantee hospitals, state health departments and each funder's board.

How Grants for Sickle Cell Organizations Fit a Community Budget

Of the 84 grants to named sickle cell groups in the November 1, 2026 pull, 61 were $5,000 or less and the median was $1,450. That pays for a few months of gas cards for clinic trips or a week of camp for a handful of kids. It won't carry a case manager's salary. Most community sickle cell groups stack several kinds of money:

Grantsights' honest view: for most sickle cell groups, 990-PF foundations are a real but secondary source. Individual donors, events, public health contracts and gifts from community foundations (which file Form 990, so they aren't in these counts) can easily carry more of the budget. Foundation grants are best used for the things those sources won't pay for, like emergency bills for families, transportation and a part-time coordinator.

Who Funds Sickle Cell Organizations: What 990-PF Filings Show

Grantsights analysis of 990-PF filings pulled November 1, 2026 found 53 foundations that made 84 grants to sickle cell groups, totaling $766,414, or about $9,100 per grant on average. That average is misleading. Just 12 gifts of $25,000 or more account for $564,984, about 74% of the total, and the 5 largest alone add up to more than half. According to IRS guidance on Form 990-PF, the return is how private foundations report their charitable distributions, which is why each gift below can be traced to a public filing.

For example, the Highmark Foundation gave the South Central PA Sickle Cell Council in Harrisburg $95,000 in 2024 for a community-based awareness and education effort, and the Waterday Foundation added $9,040 in unrestricted money in 2023. A single California funder, the A&J Kay Family Foundation, gave $186,000 across 2 years to the Sickle Cell Disease Foundation in Ontario, which is why California shows up near the top of the dollar list with just 1 foundation behind it.

Sickle cell funders by state

States follow the recipient address on each 990-PF, after employee gifts were removed. California had only 1 such foundation.

Reading the state table

Maryland's lead is partly an address effect. Several of its gifts, including $25,000 from the Kaufmann Foundation and $25,000 from Arconic in 2023, went to SCDAA's national office, which the filings list in Hanover, Maryland. The local picture is smaller: the Bobby Engram Foundation made 4 program support gifts to the Maryland Sickle Cell Disease Association in 2023, the largest $14,220, and the Foundation for Spirituality and Medicine gave a church sickle cell ministry at Simpson United Methodist Church in Mount Airy $25,000 in 2023 for operations.

Oklahoma is the opposite pattern: 3 foundations, all from one family's giving, and all to one group. One organization in Oklahoma, Supporters of Families with Sickle Cell Disease in Tulsa, received $80,000 across 5 gifts in 2023 and 2024 from the Zarrow Families Foundation, the Anne and Henry Zarrow Foundation and the Maxine and Jack Zarrow Family Foundation. Texas is a warning sign for anyone counting funders instead of dollars: 4 foundations gave to Texas sickle cell groups, but none of those gifts topped $600.

The Partnership Route: Children's Hospitals and Red Cross Blood Drives

HRSA's page says its funded network from 2021 to 2026 reached about 25,000 people through about 5 specialty care centers, more than 50 clinical sites and 25 community-based organizations. Clinical sickle cell money flows to hospitals, and so does a lot of foundation money tagged for health. When Grantsights looked at health-tagged gifts that mention sickle cell in the recipient or purpose, many went to children's hospitals' sickle cell programs and to American Red Cross sickle cell initiatives, whose filed purposes describe more sickle cell testing and a more diverse blood supply.

Those gifts aren't in the 84-grant count, but they point to 2 routes for a community group:

• Blood-drive partner. A Red Cross chapter running a sickle cell initiative needs donors from the same communities your families come from. Your group can host drives at churches, campuses and walks, then name the partnership in your own foundation asks.
• Hospital partner. A children's hospital sickle cell clinic often has a funder for clinical work but no one to help families with rides, school meetings or the move to adult care. Offer that piece and ask whether the hospital will write you into its next proposal as a paid partner.

A red flag in either deal is a partnership that's all credit and no budget line. Get the dollars in writing before you put the hospital's or chapter's name on your proposal.

Why the Health List Fits Sickle Cell Groups Best

Within the health tag, too few foundations gave to sickle cell work to justify a separate list, so Grantsights points sickle cell groups to the broader health list. Most of the 84 gifts to named sickle cell groups carried no cause tag at all, and the tagged gifts that mention sickle cell went mostly to health work. That makes health the closest fit, not a perfect one. A group that runs a summer camp or a parent support program may also find funders in the guides on grants for summer camps and grants for family resource centers.

These rows count every health grant on 990-PF returns in Grantsights analysis of filings pulled October 29, 2026, not only sickle cell gifts. The median health gift in each of these states is $5,000 or more, well above the $1,450 median for named sickle cell groups, which suggests many sickle cell groups ask too small or reach only corporate and family givers. The free preview on the Grantsights health funder list shows health funders across your state, not ones chosen for sickle cell work, so read each funder's past gifts for blood disorders, chronic illness or health equity before you write. One state's full list costs $29, every cause in every state for a year costs $99, and you can ask for your money back on either within 30 days.

What 42 U.S.C. 300b-5 Doesn't Tell You About Federal Sickle Cell Money

The main federal sickle cell grant law has 2 parts, and a community group isn't the lead applicant in either. According to GovInfo's text of 42 U.S.C. 300b-5, subsection (a) lets the Secretary of Health and Human Services fund data collection and public health work on heritable blood disorders, including support for community-based organizations and health departments that run education and training for patients, communities and providers. The eligible list there includes states, tribes, health departments, universities and "a nonprofit entity with appropriate experience."

Subsection (b) is the demonstration program now run by the Health Resources and Services Administration (HRSA). Its eligible entities are federally qualified health centers, nonprofit hospitals or clinics and university health centers, and each one must have a collaborative agreement with a community-based sickle cell disease organization or a nonprofit with sickle cell experience. The statute's last authorization figure is $4,455,000 a year for fiscal years 2019 through 2023.

Here's what the law leaves out:

1. It doesn't set a share for community groups. The statute requires the collaborative agreement but doesn't say how much of the grant the community partner gets. That's negotiated, and many groups underestimate what to ask for.
2. Priority isn't a guarantee. Under subsection (a), the Secretary "may give priority" to applicants tied to a community-based organization. That's a reason to be named in someone's application, not a promise of money.
3. Experience is a gate. A demonstration grantee, its community partner or its hematology partners must show at least 5 years of work with people who have sickle cell disease. A young group may count only as part of a partnership with deeper history.
4. Reimbursement is part of the job. Grantees must work to secure payment under Medicaid, the State Children's Health Insurance Program and other health programs. A community group that helps families keep coverage can point to that duty.
5. Transition care is named. Since a 2018 amendment, grantees must provide or coordinate services for teenagers moving to adult care, a job community groups often already do.

HRSA Hubs and CDC Data States: Where Community Groups Fit

According to HRSA's Sickle Cell Disease Programs page, newborn screening programs identify about 1,800 babies with sickle cell disease each year, and fewer than half of children with the disease get disease-modifying treatment. HRSA now runs the Sickle Cell Disease Regional Care Excellence (SoRCE) Program, which funds 7 Regional Coordinating Hubs that partner with Clinical Community Spokes. The page lists the FY 2026 hubs as Rhode Island Hospital, Thomas Jefferson University in Pennsylvania, Duke University in North Carolina, the University of Alabama at Birmingham, Children's Hospital Medical Center in Ohio, Washington University in St. Louis and an inherited blood disorders center in California. As of November 1, 2026, the page says HRSA intends to fund a national coordinating center for the hubs; it doesn't list one as awarded.

If a hub covers your region, contact its sickle cell team and ask how community organizations join as spokes or partners. The statute also ties grantees to each state's sickle cell newborn screening program and its Title V maternal and child health program, so your state health department's newborn screening follow-up staff are worth a call too. For the public health money behind Title V, see maternal and child health grants.

The Centers for Disease Control and Prevention (CDC) runs a separate data effort. According to CDC's page on the Sickle Cell Data Collection program, the program has run since 2015, works with teams in 16 states, and helps states decide where to put resources, and CDC puts the number of Americans with the disease at about 100,000. It doesn't fund community services, but its state teams produce maps of where patients live and where care is missing. That's the data you want in a proposal, so check whether your state is one of the 16 and ask its team what it can share.

Costing a Sickle Cell Program for a Grant Request

A common mistake is asking a funder for "general support" without showing what a family actually costs your group. Sickle cell families face pain crises, emergency room visits, missed school and work, and long drives to a specialist. This table is illustrative, not data: your costs depend on your region, caseload and partners.

Transportation is a real funding line, not a soft cost. The Cannon Foundation's $25,000 to the Greensboro sickle cell agency in 2023 named transportation and access to needed services, and the Springs Close Foundation gave the James R. Clark Memorial Sickle Cell Foundation in South Carolina $5,000 in 2024 for emergency need-based grants.

6 Sickle Cell Projects Foundations Have Paid For

Each of these traces to a named grant in the Grantsights pull of November 1, 2026.

1. Community care coordination. The Zarrow Families Foundation gave Supporters of Families with Sickle Cell Disease $40,000 in 2023 for care coordination across the Tulsa area.
2. Mental health and outreach. The Foundation for a Healthy St. Petersburg gave the local SCDAA chapter $57,000 in 2024 to expand outreach and education for mental health and wellness.
3. Awareness and education. Highmark Foundation's $95,000 in 2024 to the South Central PA Sickle Cell Council paid for a community awareness and education push.
4. Health equity work. The Greater Rochester Health Foundation gave Sickle Cell Advocates of Rochester $30,000 and $10,000 in 2023 and another $10,000 in 2024, each filed under racial health equity.
5. Education and health services. The Health 1st Foundation gave the Sickle Cell Foundation of Georgia $20,032 in 2024 for education and health services.
6. Education programs in Cleveland. The Emma R. Fox Charitable Trust gave the American Sickle Cell Anemia Association $5,000 in 2024 for education development, and Prayer Unlimited added $3,000 that year and $2,700 in 2023.

Patient support funders for other diseases behave much the same way. The guide on grants for cancer support organizations shows a similar mix of small family-assistance gifts, a few large regional health foundations and plenty of event money.

Common Mistakes in Sickle Cell Grant Requests

These 5 mistakes help explain why so many of the 84 gifts stayed under $5,000.

• Asking only corporate and family givers. Many gifts in the pull were a few hundred dollars from corporate foundations. Health-focused funders such as Quantum, Highmark and the Foundation for a Healthy St. Petersburg made the bigger grants. Start there.
• No outcome numbers. Count families served, rides given, emergency visits avoided and teens moved to adult care. A funder reading about pain crises wants to know what changed.
• Underestimating the ask. The median health gift in the states above is $5,000 or more. Check what each funder gave peers, using how to read a 990-PF, and ask in that range.
• Hiding the hospital tie. If a hospital clinic refers families to you, say so and attach a letter. It shows the funder you're part of the care system.
• No 501(c)(3) of your own. A church ministry or new parent group may need a fiscal sponsor first, and what is a fiscal sponsor walks through how that arrangement works.

A Sickle Cell Organization's Funding Calendar

This 12-month plan has 6 steps. Your state's health department and your regional hub set the real dates, so confirm them before you plan around them.

The Grantsights grant database tracks open federal and state notices, including health programs your hospital partners might apply for.

Related Guides for Sickle Cell Groups

Sickle cell groups that sit inside a broader health nonprofit will find general operating funders in grants for health nonprofits, which explains how health foundations size up a first-time applicant. If your outreach staff work as peer mentors or community health workers, grants for community health workers covers how that job gets funded.

Groups that run a sickle cell camp should read grants for summer camps, since camp funders rarely ask about diagnosis. Parent support groups can use grants for family resource centers, and groups doing newborn and early childhood outreach share public funding streams with maternal and child health grants. Support groups built around other serious illnesses deal with the same small-gift math, which grants for cancer support organizations walks through. Groups that lend equipment, run respite grants or coordinate care for another serious disease face the same small-gift math, laid out in grants for ALS support organizations.

FAQ: Common Questions

How many foundations give grants to sickle cell organizations? 53 in Grantsights' search of 990-PF filings pulled November 1, 2026, after employee gifts were removed.

How big is a typical foundation grant to a sickle cell group? The median was $1,450, and 61 of 84 gifts were $5,000 or less.

Is there a federal grant for community sickle cell organizations? Not on its own. HRSA funds hospitals and health centers that must partner with one.

Which states have the most foundations funding sickle cell groups? Maryland had 9, Georgia 7 and Florida 6.

Why does Grantsights point sickle cell groups to the health list? Tagged gifts that mention sickle cell went mostly to health work.

Do hospitals and blood centers get sickle cell grants too? Yes, and partnering with them is a real route for community groups.

Sources

• GovInfo: 42 U.S.C. 300b-5, Sickle cell disease and other heritable blood disorders research, surveillance, prevention, and treatment (opens in a new tab)
• HRSA Maternal and Child Health Bureau: Sickle Cell Disease Programs (opens in a new tab)
• CDC: Sickle Cell Data Collection (SCDC) Program (opens in a new tab)
• CDC: About the Sickle Cell Data Collection Program (opens in a new tab)
• IRS: About Form 990-PF (opens in a new tab)