Mary Chapman,  features writer—

The Institute for Gene Therapies (IGT) has launched, with the aim of maximizing the potential of gene therapies in genetic disorders such as hemophilia. Comprised of industry leaders, scientists, and patient advocates, the IGT’s overarching goal is to set the foundation for a modernized regulatory and reimbursement…

AscellaHealth and Audaire Health together are offering on a hemophilia management program that aims to containing prescription costs and help patients better manage their treatment needs. The program leverages AscellaHealth’s network of specialty pharmacy partners and Audaire’s healthcare technology to offer pharmacy network design, therapy utilization management, and clinical…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

A publicly available, patient-reported outcome measure is being jointly developed by Green Park Collaborative (GPC) and the National Hemophilia Foundation (NHF) to evaluate the effect of gene therapy on the mental health outlook of people with hemophilia type A and type B. The collaboration follows work…

To help promote healthy lifestyle changes, the pharmaceutical company Takeda has enrolled some 900 patients with bleeding disorders like hemophilia in the Virgin Pulse Global Challenge. The annual well-being Global Challenge aims to equip teams of employees with the knowledge, tools and support necessary to enhance performance and…

As part of a new partnership focused on hemophilia treatment and management, members of insurer Highmark will receive medication exclusively from Option Care Health, Soleo Health, and the Hemophilia Center of Western Pennsylvania. The collaboration that begins in January is aimed at keeping down costs associated with…

Citing Soleo Health’s clinical expertise and data-reporting capabilities, U.S. national insurer Highmark has tapped the specialty pharmacy and infusion services provider to help care for its members who have hemophilia. An independent licensee of the Blue Cross Blue Shield Association, Highmark covers about 190 hemophilia patients.

To encourage more women to take part in disease research, the Patient-Centered Outcomes Research Institute (PCORI) has chosen the Hemophilia Federation of America (HFA) and its FIRST project to receive a Eugene Washington PCORI Engagement Award. The HFA’s FIRST project stands for Females in Research Sharing and…

Based on feedback from the hemophilia B community, Aptevo Therapeutics announced that a 3,000 international unit (IU) vial assay of Ixinity  is now available for patients preferring the convenience of a larger assay over the smaller IUs on the market for this intravenous recombinant factor IX. The…

A new five-year alliance between Bayer and the World Federation of Hemophilia (WFH) Humanitarian Aid Program will deliver training, education and treatments to healthcare professionals in more than 60 underserved countries. ”Three out of four people with bleeding disorders living in developing countries do not have access to…