Lawmakers in May devoted close attention to the role that pharmacy benefits managers (PBMs) play in our health care system. PBMs are middlemen that create and administer drug formularies on behalf of health insurers, self-insured employers, Medicaid, and other payers. PBMs choose which drugs a plan will cover, negotiate drug prices on behalf of payers, […]
Fundraising Written by Jessica Bomford, May 24, 2023 Join our 36 Challenge and get active to raise money. Working at your own pace, our challenge aims to bring our community together to try new activities and raise much-needed funds at the same time. We know it’s really tough to raise money at the moment, but […]
Healthcare Written by Aaron Dennis, May 19, 2023 When Amy’s baby son was unexpectedly diagnosed with an extremely rare genetic bleeding disorder, she mentally shut down through fear for his future. After experiencing nosebleeds, rashes and bruising, Amy’s son Logan was diagnosed with Glanzmann thrombasthenia (GT), a platelet disorder which affects only about 150 people […]
Awareness Written by Aaron Dennis, May 16, 2023 For Ros Cooper, finding support for her mental wellbeing has been challenging, but it is helping her cope with one of the toughest times of her life. Ros, who has type 3 von Willebrand disorder, was infected with hepatitis C by contaminated blood products in the 1980s. […]
On May 11, 2023, the U.S. Food and Drug Administration released final guidance providing recommendations for evaluating blood and plasma donor eligibility using individual risk-based questions. Consistent with FDA’s January 2023 proposed guidance, the final guidance eliminates time-based donation deferrals and screening questions specific to men who have sex with men (MSM) and women who have […]
Healthcare Written by Julia Collins, May 10, 2023 Julia Collins is our Supporter Engagement Officer, who works as part our services team. She is jointly responsible for running events, organising membership data, coordinating volunteers and engaging with haemophilia centres around the UK. Here she gives us an insight into her working week. Monday We’re only […]
Fundraising Written by Aaron Dennis, May 5, 2023 Having a sympathetic employer can really boost your fundraising, as Emma discovered when her firm doubled her donation to the Haemophilia Society. Emma, whose brother Scott has severe haemophilia, raised £264 with her colleague Sharon by holding a cake sale at her office on World Haemophilia Day. […]
Protections for people who rely on copay assistance have been a top priority for HFA and many other patient groups for several years. That effort took a big step forward in April with the introduction of a first-ever Senate version (S. 1375) of the HELP Copays Act. Sponsored by Sens. Kaine, Marshall, Markey, and Ernst, […]
Fundraising Written by Jessica Bomford, April 25, 2023 Our London Marathon runners have raised an awe-inspiring £40,000 which will help support people with a bleeding disorder in the UK. We can’t thank our runners enough for their dedication and stamina in completing the race and raising such an incredible amount of money in sponsorship. The […]
Awareness, Fundraising, Volunteers Written by Jessica Bomford, April 19, 2023 When seven-year-old Jacob decided to raise £100 for the Haemophilia Society he had no idea it would snowball into a community event which collected a whopping £1,400. Jacob, who has severe haemophilia A, signed up to do a sponsored 5.5 mile coastal walk to raise […]
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