WALTHAM, Mass.--(BUSINESS WIRE)-- Bioverativ Inc. (NASDAQ: BIVV), a global biotechnology company focused on the discovery, development and commercialization of innovative therapies for hemophilia and other rare blood disorders, joins the global hemophilia community in recognizing World Hemophilia Day and supporting the millions of women and girls impacted by bleeding disorders through this year’s theme, “Hear Their Voices.”
“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, Chief Executive Officer of Bioverativ. “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.”
Improving Understanding of Bleeding Disorders
in Women and Girls
Bioverativ is a founding member and the sole corporate sponsor of My Life, Our Future, a nationwide program that provides free genetic testing for people living with hemophilia. The program, which is a collaboration with the American Thrombosis and Hemostasis Network, Bloodworks Northwest, and the National Hemophilia Foundation, was recently expanded to include potential and confirmed carriers following community feedback about this important unmet need.
Of the more than 6,600 people who have consented to participate in the My Life, Our Future Research Repository, nearly 650 have been women and girls confirmed to carry the hemophilia gene. This knowledge provides them with information to better manage their own health and aid in family planning decisions, and also helps improve scientific understanding of hemophilia. The program aims to enroll 2,000 confirmed carriers in the My Life, Our Future Research Repository to further strengthen this invaluable resource.
“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 Barbara A. Konkle, M.D., Associate Chief Scientific Officer, Bloodworks Northwest, and principal investigator for My Life, Our Future.
Closing the Global Treatment Gap
Bioverativ also continues its commitment to close the treatment gap in the developing world, along with Swedish Orphan Biovitrum AB (publ) (Sobi™). The companies have committed to donate up to one billion international units of factor therapy over 10 years, with the World Federation of Hemophilia’s (WFH) Humanitarian Aid Program receiving 500 million units over five years.
The donation, which is the largest single donation of its kind, is already making a life-changing impact for people with hemophilia in developing countries, including:
- Treating over 12,300 reported patients in 41 countries in 2016
- Treating nearly 16,000 acute bleeds, more than 790 of which were life-saving
- Enabling 795 life- and limb-saving surgeries in 2016. That number has risen to over 1,000 as of the end of March 2017.
- Doubling the percentage of children receiving treatment from 14 to 28 percent
“The WFH Humanitarian Aid Program has transformed, over the past two years, into one of the most effective global programs in addressing the significant treatment gaps that occur for those living without much-needed care,” said Alain Weill, WFH President. “The expansion of the program is the result of the ongoing support from Bioverativ and Sobi who demonstrate strong leadership in providing certainty to those most in need.”
Building Awareness and Community Engagement
On the days around World Hemophilia Day, which is honored every year on April 17, Bioverativ will join with the WFH to raise awareness and encourage ongoing support for the broader hemophilia community by:
- Collaborating with hemophilia advocacy groups to illuminate several landmarks in red, including the Zakim Bridge, Prudential Tower, and South Station in Boston; The Wrigley Building in Chicago; the Miami Tower in Miami and the Korean War Veterans Memorial Bridge in Nashville.
- Working with U.S. advocacy groups to co-host family-friendly community events that include hands-on, educational science activities to spark imaginations.
To learn more about hemophilia and how you can support the global community, visit www.wfh.org.
Bioverativ is a global biotechnology company dedicated to transforming the lives of people with hemophilia and other rare blood disorders through world-class research, development and commercialization of innovative therapies. Launched in 2017 following separation from Biogen Inc., Bioverativ builds upon a strong heritage of scientific innovation and is committed to actively working with the blood disorders community. The company’s mission is to create progress for patients where they need it most and its hemophilia therapies when launched represented the first major advancements in hemophilia treatment in more than two decades. For more information, visit www.bioverativ.com or follow @bioverativ on Twitter.