Author Archives: Mary Chapman

Bleeding disorder patients and their supporters are encouraged to participate on Sept. 18 in Unite Day, a national virtual event aimed at celebrating the community and underscoring the need for treatment for all. Unite Day complements participation in the annual Unite for Bleeding Disorders Walk, both presented by the…

InSourceRx is partnering with the National Hemophilia Foundation (NHF) to help those with inheritable blood disorders, such as hemophilia, better afford medications. InSourceRx is a pharmacy discount card company that teams up with nonprofit and patient advocacy organizations to provide discounts for essential medicines and supplies. Blood…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

As part of a Coalition for Hemophilia B contest, people with hemophilia B, their siblings, and caregivers are  invited to design a comic or coloring book that tells a story about how they manage this rare blood disease. There will be a $500 award for winners in each of…

Grifols is expanding its commitment to the World Federation of Hemophilia (WFH) Humanitarian Aid Program, donating at least 240 million international units (IU) of blood clotting factors over eight years to consistently treat some 3,000 bleeding disorder patients in developing countries. The contribution, starting in 2022 and running through…

From donning red gear to flooding social media, supporters are gearing up for World Hemophilia Day 2021 on April 17. The event is focused on raising awareness and understanding of the bleeding disorder that affects about one in 10,000 people globally. Organized by the World Federation of Hemophilia (WFH),…

The National Hemophilia Foundation (NHF) is calling for nominations for its Awards of Excellence, which honor members of the bleeding disorders community. The awards are for those who have helped improve the lives of patients with bleeding diseases, including those with hemophilia, through treatment and care, advocacy,…

Activities are underway to mark Bleeding Disorders Awareness Month, set aside each March to call attention to such disorders as hemophilia and von Willebrand disease, and the more than three million U.S. residents living with them. Patients, caregivers, and activists nationwide are jumping on social media platforms,…