ResearchCLINICALTRIALSMay 7
Researchers at St. Jude Children's Research Hospital are looking for 145 patients and families to help them understand what information people need to make decisions about gene therapy for rare diseases like sickle cell disease. The study will use what they learn to create a website with educational materials and decision-making tools to help patients and families understand their gene therapy options.
WHY IT MATTERSThis study is actively recruiting now and will directly shape how gene therapy information is presented to patients and families, making it easier for you to understand your treatment options before making decisions.
NewsUNITERAREApr 20
The PAN Foundation's financial assistance program for sickle cell disease patients is currently closed and not accepting new applications. This program helps patients pay for medications and treatment costs related to sickle cell disease. You can check the PAN Foundation website to find out when the program reopens or to explore other assistance options.
WHY IT MATTERSIf you have sickle cell disease and were counting on PAN Foundation's copay assistance, you'll need to find alternative financial support resources immediately, as this major assistance program is not currently accepting applications.
Clinical trialUNITERAREApr 3
Researchers at St. Jude Children's Research Hospital are looking for people with sickle cell disease to participate in a study about egg health and fertility. The study will examine how sickle cell disease affects the ovaries and a woman's ability to have children. This research could help doctors better understand and protect fertility in women with sickle cell disease.
WHY IT MATTERSThis trial is now recruiting patients with sickle cell disease to understand how the disease affects ovarian function and fertility — information that could lead to better fertility preservation strategies for affected women.
Clinical trialUNITERAREApr 3
Researchers at Emory University are looking for pregnant women with sickle cell disease to join a study about blood transfusions. The study will test whether giving blood transfusions during pregnancy can help prevent serious complications for both the mother and baby. This is a Phase 4 trial, which means the treatment has already been tested before and researchers want to learn more about how well it works.
WHY IT MATTERSThis trial is now actively recruiting pregnant women with sickle cell disease — participation could help prevent pregnancy complications like stroke, organ damage, and miscarriage that occur at higher rates in this population.
NewsUNITERAREApr 3
The PAN Foundation's financial assistance program for sickle cell disease patients is currently closed and is not accepting new applications. This program previously offered up to $12,000 per year to help eligible patients with treatment costs. The fund status changed on April 2, 2026.
WHY IT MATTERSIf you have sickle cell disease and were counting on this $12,000 annual assistance from PAN Foundation, you'll need to explore other financial support options immediately since this fund is no longer accepting applications.