HFA Special Policy Report: New Medicaid Rules and Medical Exemptions

By Adam Alver, Policy Director Medicaid Work Reporting Requirements Are Here Major changes to Medicaid are already reaching patients in several states. Beginning no later than January 1st, 2027, certain adults will have to show they are working, attending school, volunteering, or taking part in another approved activity to enroll in or keep their Medicaid […]

CSL Provides Update on HEMGENIX® Supply and Patient Access 

The following is a letter from CSL. See the letter in its entirety here. Dear Hemophilia B Community, In March, we shared an update regarding HEMGENIX® (etranacogene dezaparvovec-drlb) availability and our efforts to support people living with hemophilia B while maintaining the highest quality standards for this one-time gene therapy. Since then, we have provided […]

HFA Proud to Receive Top Rating from Charity Navigator

Hemophilia Federation of America is proud to announce its strong financial health and ongoing effectiveness and reliability have helped it earn a four-star rating from Charity Navigator, one of the nation’s largest charity evaluators, providing donors with unbiased, thorough and credible ratings of more than 230,000 organizations since 2001. This rating designates HFA as an […]

Bleeding Disorders Organizations Partner to Prepare for Coming Medicaid Changes 

Download the statement here. Medicaid work reporting requirements, enacted last year as part of HR 1 (the One Big Beautiful Bill Act), will soon go into effect. The national bleeding disorders organizations want to update you on what we are doing to prevent coverage losses – and outline our plans to provide the community with […]

Sanofi Provides a Statement on FDA Letter

On June 22, 2026, the Food and Drug Administration issued a warning letter to a facility in Ireland. Sanofi shared the following statement with Hemophilia Federation of America: Patient safety and the quality of our products are our highest priorities.  We take the FDA Warning Letter issued to the Waterford (Ireland) facility with the utmost […]

The Enduring Legacy of Bleeding Disorders Camp

Summer Camp

Summer is a time of continuing education. A time to take a break from the tasks that are required of you and learn something new. In our community, summer’s continuing education generally involves the rite of passage of heading off to bleeding disorders camp. As we move deeper into the summer, kids and teens with […]

Incyte Completes Acquisition of Vega Therapeutics, Expanding its Hematology Portfolio

The following announcement is from a press release from Incyte. Read the full press release here. Incyte announced July 6, 2026, it has completed its acquisition of Vega Therapeutics Inc., a wholly owned subsidiary of Star Therapeutics LLC. The acquisition adds VGA039, a novel monoclonal antibody in Phase 3 development for von Willebrand disease to Incyte’s hematology portfolio. […]

Incyte Acquires Vega Therapeutics, Expanding its Hematology Portfolio into Bleeding Disorders

The following is an announcement from Incyte: WILMINGTON, Del.— Incyte announced on June 8 that it has entered into an agreement to acquire Vega Therapeutics Inc., a wholly owned subsidiary of Star Therapeutics LLC, for $1.25 billion. Star Therapeutics will be eligible to receive up to $750 million in additional payments upon the achievement of sales milestones, for total potential consideration of up to $2.0 […]

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