The partners aim to improve national awareness so that information about the disease can reach broader audiences through online media platforms. To do this, they will provide online tools so that sickle cell patients, caregivers, friends, clinicians, and researchers are better served.
Member organizations of the SCDAA help families access educational resources that increase overall knowledge of the disease, provide services to support the community, host summer camps, support research, and foster advocacy efforts for patients and families.
Under the newly established partnership, Emmaus will provide funding for educational materials so those who are living with sickle cell disease and their families can increase their knowledge and understanding of the disease, the treatment options available to patients, and the importance of having a multi-specialist medical care team.
“The sickle cell community is diverse and includes pharmaceutical companies that are working to find better treatments and a universal cure for this disease,” Beverley Francis-Gibson, president and CEO of the SCDAA, said in a press release.
“Emmaus has been researching sickle cell disease for more than two decades, and we are thrilled to have their continued support of the sickle cell community with this unique partnership to bolster SCDAA’s work with patient education and awareness initiatives,” she said.
In 2018, the European Medicines Agency (EMA) began reviewing the therapy as a potential treatment option for SCD.
After its U.S. approval, Endari became the first treatment in two decades to reduce the complications of sickle cell in adults and was the first treatment approved for use in children.
“SCDAA has been a longtime champion for the sickle cell community. We are delighted to partner with them to bring new resources to the table to help ensure that individuals and families affected by sickle cell disease, local organizations around the United States, and the general public have the tools needed to improve the quality of life for the sickle cell community,” said Yutaka Niihara, MD, founder and CEO of Emmaus.
“Our partnership represents another step forward in the fight to bring greater awareness and treatment options to the sickle cell community,” Niihara added.
SCD is estimated to affect nearly 100,000 Americans, with about 1,000 babies born with the disease each year in the U.S.
According to the Centers for Disease Control and Prevention (CDC), SCD is particularly common among those whose ancestors came from sub-Saharan Africa, Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America), Saudi Arabia, India, and Mediterranean countries such as Turkey, Greece, and Italy.