More than 12,300 hemophilia cases in developing countries were treated with therapy donations from Bioverativ and its partner Sobi in 2016, Bioverativ said in a press release about its participation in World Hemophilia Day.
The company, which is promoting genetic testing in women and girls who could be susceptible to bleeding episodes, worked with other groups to raise awareness of the disease on hemophilia day. The longer version of Sobi’s name is Swedish Orphan Biovitrum. It also develops therapies.
One hemophilia day project Bioverativ participated in was illuminating several American landmarks in red, including the South Station in Boston, the Miami Tower in Miami, and the Wrigley Building in Chicago. The company also promoted such community events for the April 17 celebration as hands-on and educational science activities open to patients and their families.
“Bioverativ shares the World Federation of Hemophilia’s commitment to understanding the needs of all members of the bleeding disorders community, including women, and we work to build the community’s insights into meaningful programs and innovative new treatments,” said John Cox, Bioverativ’s CEO. “We have made unprecedented commitments in the areas of genetic testing for women and girls and humanitarian aid in the developing world that are in direct response to needs voiced by the community.”
The company is focused on the discovery and development of therapies for hemophilia and other blood disorders.
Bioverativ is also a founding member and sole corporate sponsor of a nationwide program called My Life, Our Future, which provides free genetic testing to those with hemophilia. Knowing what genes caused their condition allows patients to obtain appropriate treatment and family planning counseling, and provides scientists with insight into hemophilia that could be helpful in research.
More than 6,600 people have participated in the My Life, Our Future Research Repository, including 650 women and girls carrying hemophilia genes. The program aims to enroll 2,000 additional carriers.
“The substantial research repository created through My Life, Our Future offers the opportunity to generate new insights and may ultimately contribute to improved health for women and girls with bleeding disorders,” said Dr. Barbara Konkle, principal investigator for My Life, Our Future.
Bioverativ’s pipeline includes approved treatments for hemophilia A and B in the United States and other countries.
Eloctate is a recombinant clotting factor VIII therapy. It treats hemophilia A by fusing to a portion of a protein known as IgG1.
The therapy is for adults and children with hemophilia A. It is used to control bleeding episodes and bleeding during an operation. It also used as a preventive treatment to reduce the frequency of bleeding episodes.
Alprolix, a recombinant human coagulation factor IX fusion protein, or rFIXFc, is an artificial clotting factor. It was engineered to stay in the body a considerable length of time.