Category: Hemophilia Society

Awareness, Charity, Fundraising, Member story Written by Suzy Fisk, March 16, 2023 We are so impressed by 7-year-old Tegen, from Wiltshire, who gave a talk to her class, and an assembly for her whole school, about haemophilia.   “I told them that haemophilia is a clotting problem, and then our teacher helped explain what clotting means,” […]

Member story Written by Aaron Dennis, March 10, 2023 Members of the Lincolnshire and East Midlands local group are setting the pace when it comes to raising money for our fundraising challenge Race Around the World. Their team, named ‘The Sherwooders’ already has 12 members signed up and they’re determined to smash last year’s fantastic […]

Healthcare Written by Aaron Dennis, March 10, 2023 As part of a series featuring staff at the Haemophilia Society, Jeff Courtney, our Policy and Public Affairs Manager, describes his work in a busy week of engagement, lobbying and policy work.  Tuesday My week is usually a mixture of time in our office in Borough, meetings […]

APPG, Public Inquiry Written by Suzy Fisk, March 8, 2023 Yesterday, 7 March, the All Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood had a meeting with the Cabinet Office in Parliament to discuss compensation and redress for people infected and affected by contaminated blood and blood products. The Haemophilia Society acts as the […]

SAN RAFAEL, Calif., March 6, 2023 — BioMarin Pharmaceutical Inc., a global biotechnology company dedicated to transforming lives through genetic discovery, announced that it received notice this afternoon from the U.S. Food and Drug Administration (FDA) that the agency has extended review of the company’s Biologics License Application (BLA) for ROCTAVIAN™ (valoctocogene roxaparvovec) gene therapy for adults […]

Charity Written by Jessica Bomford, March 7, 2023 Matthew is aiming to complete an astonishing eight endurance events this year to raise thousands of pounds for the Haemophilia Society as a tribute to his grandma and uncle.  Matthew’s grandma, Mary Smith, who died in 2022, was unaware she was a haemophilia carrier until the birth […]

Source: Sanofi Press Release Sanofi announces that the U.S. Food and Drug Administration approved ALTUVIIIO™ [Antihemophilic Factor (Recombinant), Fc-vWF-XTEN Fusion Protein-ehtl], previously known as efanesoctocog alfa, a first-in-class, high-sustained factor VIII replacement therapy for adults and children with hemophilia A.  Sanofi states that with ALTUVIIIO, they are looking to raise the bar for people with […]

Dear Addy,  I recently attended an event and learned about submitting issues with my insurance to HFA’s Project CALLS. I have an insurance issue, however, I still have some questions about how CALLS works and what happens when I submit an issue. Can you explain the process?  Signed,  CALLS Quandary   Dear Quandary,  You are not […]

Healthcare Written by Jessica Bomford, February 10, 2023 As part of a series featuring staff at the Haemophilia Society, Jessica Bomford, our Public Inquiry Communications Manager, describes her work at the last week of the Infected Blood Inquiry.  Tuesday Almost four years since the Infected Blood Inquiry began its public hearings, we’re only four days […]

This African American History Month, HFA asks our community to think back on the family members they’ve loved and the moments they created. We ask our community to think on the diversity of our community, the stories we’ve shared, and the people of color who helped make the bleeding disorder community as strong as it […]