Abogacía

Solos podemos hacer muy poco; Juntos podemos hacer mucho más. -Helen Keller

La Fundación de los Trastornos Hemorrágicos Lone Star es miembro de la Coalición para la Abogacía de Trastornos Hemorrágicos de Texas. Abogamos a nivel estatal y federal sobre cuestiones importantes para la comunidad de trastornos hemorrágicos. La coalición es un esfuerzo conjunto de la Fundación de Trastornos Hemorrágicos Lone Star y la Asociación de Hemofilia Texas Central. Obtenga más información sobre la coalición en: txbdcoalition.org

¡Días de Cabildeo en Austin 2023!

Acompañenos en nuestros Días de Cabildeo en Austin, el 1-2 de marzo 2023! Por favor envíe su formulario de inscripción completado a Karla antes del 10 de Enero de 2023! Descargue el formulario de inscripción desde aquí.

¡Días de Cabildeo de NHF en Washington 2023!

Los Días de Cabildeo en Washington de la NHF vuelven a ser presenciales, del 8 al 10 de marzo de 2023. La Fundación de Trastornos Hemorrágicos Lone Star y la Coalición enviarán un número limitado de personas a participar. Las solicitudes ya están disponibles aquí.

Prioridades Legislativas

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Click Here to learn more about TXBDC Austin Days.

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Click Here to learn more about TXBDC Washington Days.

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News from HFA

May is Hepatitis Awareness Month
In 2001, the Centers for Disease Control and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and ’90s, thousands of people with hemophilia contracted HIV and hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factor products. The post May is Hepatitis Awareness Month appeared first on Hemophilia Federation of America.
FDA Approves One-Time Gene Therapy for Adults with Hemophilia B
From Pfizer: Pfizer Inc. announced that the US Food and Drug Administration has approved BEQVEZ™ (fidanacogene elaparvovec-dzkt) for the treatment of adults with moderate to severe hemophilia B who currently use factor IX (FIX) prophylaxis therapy, or have current or historical life-threatening hemorrhage, or have repeated, serious spontaneous bleeding episodes, and do not have neutralizing The post FDA Approves One-Time Gene Therapy for Adults with Hemophilia B appeared first on Hemophilia Federation of America.
Advocacy News: March 2024
Word From Washington Federal Agencies According to the latest KFF Medicaid Unwinding Enrollment Tracker, more than 19 million Americans have lost Medicaid coverage since states were allowed to resume eligibility verifications following the COVID-19 public health emergency (PHE). At least 70 percent of Medicaid terminations continue to be for procedural reasons (such as not returning The post Advocacy News: March 2024 appeared first on Hemophilia Federation of America.
Update on Smithsonian Institution Project to Archive Bleeding Disorders History
Hemophilia Federation of America announced, in April of 2019, a partnership with the Smithsonian Institution to document the history of the bleeding disorders community, with a focus on the tragic experiences with contaminated blood, and we’re pleased to announce the first phase of the project is complete. HFA began an initiative to collect artifacts and The post Update on Smithsonian Institution Project to Archive Bleeding Disorders History appeared first on Hemophilia Federation of America.
Advocacy News: February 2024
Word From Washington State of the States The post Advocacy News: February 2024 appeared first on Hemophilia Federation of America.