Turning science into hope for sickle cell disease.
ENJAH-SCF believes a cure — and a better quality of life along the way — starts with research that includes the people it's meant to help. We partner with institutions, amplify studies, and make sure our community has a seat at the table.
Research is how we close the gap.
Sickle cell disease is one of the most common inherited blood disorders in the United States — yet it has historically received a fraction of the research investment given to diseases of similar scale. Every study funded and every patient represented moves the science, and the standard of care, forward.
Gene therapies and disease-modifying treatments are reaching patients for the first time in a generation.
Communities most affected by SCD remain underrepresented in clinical trials and research leadership.
Patients and families offer lived experience that shapes better, more relevant research questions.
Awareness of trials and studies is often the biggest barrier — not eligibility or willingness to participate.
Health Equity & Research Partnership Program
This is one of ENJAH-SCF's five core programs — built to make sure sickle cell research reflects, includes, and ultimately serves the communities most impacted by the disease.
- Partnering with academic medical centers, hospitals, and research institutions on SCD-focused studies.
- Connecting eligible patients and families with clinical trial information in plain, accessible language.
- Advocating for equitable research funding and inclusive trial design.
- Translating research findings back to the community — so knowledge flows both ways.
Are you a researcher or institution?
We welcome partnerships that advance sickle cell research while centering the dignity and voice of the people it serves. Let's talk about how ENJAH-SCF can support recruitment, community trust, and dissemination.
Start a PartnershipResearch areas we champion
From the lab to lived experience, these are the areas of sickle cell research ENJAH-SCF prioritizes through partnership, awareness, and advocacy.
Genetic & Treatment Innovation
Gene therapy, novel medications, and emerging treatments that target the root cause of sickle cell disease.
Health Equity & Disparities
Understanding and addressing racial and socioeconomic gaps in diagnosis, treatment, and outcomes.
Pain Management & Quality of Life
Better ways to manage chronic and acute pain, and improve day-to-day life for people living with SCD.
Community-Based Research
Studies designed with patients and families as partners — not just subjects — from the very first question.
Maternal & Pediatric Outcomes
Research focused on newborn screening, early intervention, and safe pregnancy for those living with SCD.
Policy & Systems Research
Evidence that supports stronger legislation, insurance coverage, and healthcare systems for SCD care.
How ENJAH-SCF supports research
We don't run labs — we build the bridges that make good research possible, trusted, and useful to the people it's about.
Build trust first
We meet families where they are, with honesty about what research involvement means and doesn't mean.
Connect to opportunity
We share clinical trial and study opportunities in plain language, so eligibility isn't the barrier.
Partner with institutions
We collaborate with hospitals, universities, and research bodies pursuing sickle cell science.
Advocate for funding
We raise our voice for equitable research investment at the community, state, and federal level.
Share it back
Findings return to the community that made them possible — not locked away in a journal.
Three ways to move research forward
Participate
Living with SCD or caring for someone who is? We can help you understand what studies and trials are currently open.
Ask About StudiesPartner
Researchers and institutions can work with us to reach, recruit, and retain participants with trust and transparency.
Propose a PartnershipSupport
Every gift helps fund our Health Equity & Research Partnership Program and the community outreach behind it.
Give to ResearchResearch, answered simply
All clinical research in the U.S. follows strict ethical and safety oversight, and participation is always voluntary. We encourage anyone considering a study to ask questions and understand the process fully before deciding — we're happy to help you think it through.
Not at all. Caregivers, family members, healthcare professionals, and community advocates all play a role — from sharing information to partnering directly with research institutions.
Reputable research studies are required to protect participant privacy under federal law. We only ever connect you with information — any decision to share personal data happens directly between you and the study team.
We prioritize research that centers patient voice, addresses health disparities, and has a credible path to improving care or quality of life for the sickle cell community.
Reach out through our contact page with a brief overview of your study or institution. Our team reviews every inquiry and follows up to discuss potential collaboration.