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Events

 

Black and Blue Casino Night

The Black and Blue Casino Night is a fun evening for the bleeding disorders community and its supporters. Attendees enjoy a night of great food, dancing, casino gaming, and prizes, while raising money for the Lone Star Bleeding Disorders Foundation’s programs and services.

Black and Blue Casino Night of Stars, was scheduled for March 22, 2020. We are looking at options to reschedule. Check back for details!

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Family Education Days

In the Spring/Summer of each year, The Lone Star Bleeding Disorders Foundation hosts regional Family Education Days. MORE…

 

Camp Ailihpomeh

 

UNITE for Bleeding Disorders Walks

The Lone Star Bleeding Disorders Foundation was one of five inaugural sites of the National Hemophilia Foundation’s Hemophilia Walk Program in 2008. It started in Houston, and has grown to Austin and the Valley. This year, we are excited to be a part of the UNITE for Bleeding Disorders Walk, for all bleeding disorders! MORE…

 

Texas Bleeding Disorders Conference

TBDC is a joint effort between the Lone Star Bleeding Disorders Foundation and the Texas Central Hemophilia Foundation, bringing over 800 people from all over the state of Texas together for a weekend of education, networking, and fun. MORE…

News from HFA

  • BioMarin Update: FDA Extends PDUFA Target Action Date to June 30, 2023

    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 The post BioMarin Update: FDA Extends PDUFA Target Action Date to June 30, 2023 appeared first on Hemophilia Federation of America.

  • The Complexity of Unwinding Medicaid

    The long-heralded Medicaid “unwinding” has begun. As previously reported, state Medicaid programs have, since the start of the COVID-19 pandemic, operated under a law that prohibited them from disenrolling Medicaid enrollees for the duration of the public health emergency (PHE). Congress changed that requirement in December 2022, delinking the Medicaid continuous enrollment obligation from the PHE. The post The Complexity of Unwinding Medicaid appeared first on Hemophilia Federation of America.

  • FDA Approves Sanofi’s Once-Weekly ALTUVIIIO™

    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 The post FDA Approves Sanofi’s Once-Weekly ALTUVIIIO™ appeared first on Hemophilia Federation of America.

  • Dear Addy: Project CALLS

    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 The post Dear Addy: Project CALLS appeared first on Hemophilia Federation of America.

  • Finding Strength Through Diversity

    This Black 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 is The post Finding Strength Through Diversity appeared first on Hemophilia Federation of America.