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News & Perspectives

Coronavirus (COVID-19) 鈥 What HFA is Doing

April 30, 2020

Click Below to Translate Page to Spanish. STATEMENTS AND UPDATES During this time of rapidly-changing news surrounding the COVID-19 outbreak, HFA聽will continue to publish updates and information about COVID-19 and its effects on the bleeding disorders community. MEDICAL NEWS INDUSTRY NEWS & PRODUCT AVAILABILITY NATIONAL, GOVERNMENT AND LOCAL NEWS RESOURCES FAQ: BLEEDING DISORDERS AND COVID-19 […]

Intern Introspective: Making Our Mark

July 6, 2020

Earlier this summer, we introduced you to Will and Tameelah, our summer Policy and Government Education interns. Both young adults have been active in their local bleeding disorders community and are passionate about keeping their peers involved. This week we asked Tameelah and Will to share how they want to make their mark in our […]

Infusing Love: You Are Missed

July 1, 2020

You know what I miss? You. I miss you. I miss looking into your eyes, I miss tearing up when I try to explain my struggles and listen to yours. I miss smiling with you when I tell you about my adventures and you tell me yours. I鈥檝e been a part of the bleeding disorder […]

WFH & NHF Issue Joint Statement Regarding Two Deaths Reported in Orphan Disease Gene Therapy Clinical Trial

June 30, 2020

  The following is information from the World Federation of Hemophilia. A joint World Federation of Hemophilia (WFH) and National Hemophilia Foundation (NHF) statement* is issued on two deaths reported in orphan disease gene therapy clinical trial (*on behalf of the WFH Coagulation Product Safety, Supply, and Access Committee): We have become aware of two […]

Washington Wire: June 2020

June 30, 2020

U.S. Department of Health and Human Services releases rule paring back anti-discrimination provisions On June 12th, the HHS Office of Civil Rights released a final rule聽re-interpreting anti-discrimination provisions of the Affordable Care Act. The new rule removes explicit patient protections against discrimination by health care providers and insurers. HFA joined with twenty-eight other patient and […]

uniQure Announces License Agreement with CSL Behring to Commercialize Hemophilia B Gene Therapy

June 25, 2020

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure N.V., a gene therapy company advancing transformative therapies for patients with severe medical needs, announced that uniQure and CSL Behring have entered into a licensing agreement providing CSL Behring with exclusive global rights to etranacogene […]

A Closer Look at Hemophilia Management: Improving Outcomes with Personalized Care Now Available On-Demand

June 24, 2020

A Closer Look at Hemophilia Management: Improving Outcomes with Personalized Care is聽now available On-Demand.聽The聽RareDisease Live video education session was presented by National Organization for Rare Disorders, Inc. (NORD) in partnership with Hemophilia Federation of America and the National Hemophilia Foundation in June 2020. Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is […]

Intern Introspective: Meet Our 2020 Policy & Government Relations Interns

June 19, 2020

My name is Tameelah Dawson. I am 21 years old from Lexington, S.C., and currently a senior at Claflin University in Orangeburg, S.C., pursing a bachelor鈥檚 degree in psychology. I have been heavily active in the hemophilia community for well more than five years. I鈥檝e served as a junior board member for Hemophilia South Carolina […]

Racing Against Time, Medical Researchers, Life Science Companies and COVID-19 Survivors Launch National Campaign to Drive Blood Plasma Donation

June 18, 2020

The following is an excerpt from a press release from CSL Behring. Read the press release in its entirety here. 鈥淭he Fight Is In Us鈥 Campaign Seeks to Mobilize COVID-19 Survivors to Accelerate the Development of Potentially Lifesaving Therapies A coalition of world-leading medical and research institutions, blood centers, life science companies, technology companies, philanthropic […]

Pfizer and Sangamo Announces Updated Phase Result

June 18, 2020

The following is an excerpt from a press release from Pfizer. Read the press release in its entirety here. Pfizer Inc. and Sangamo Therapeutics Inc. announced updated follow-up data from the Phase 1/2 Alta study of giroctocogene fitelparvovec (SB-525, or PF-07055480), an investigational gene therapy for patients with severe hemophilia A. All five patients with […]

Word From Washington: Patient groups warn that Administration policy encourages discrimination in health care

June 16, 2020

HFA joined with twenty-eight other patient and health advocacy groups to issue the following statement 聽regarding a final rule released by the U.S. Office of Civil Rights/HHS on Friday, June 12th. The rule, interpreting anti-discrimination provisions of the Affordable Care Act, removes explicit patient protections against discrimination by health care providers and insurers. The groups鈥 […]

Dear Addy: Avid Advocate

June 16, 2020

Dear Addy, Each year, I travel to Washington, D.C., and my state capitol to meet with my legislators and members of Congress to discuss issues that are most important to the bleeding disorders community. Due to COVID-19, I have heard that in-person visits are no longer viable options. How can I make sure my voice […]

Sanofi and Sobi Donate up to 500 million Additional IUs of Clotting Factor

June 15, 2020

The following is an excerpt from a press release from Sanofi. Read the press release in its entirety here. Sanofi and Sobi™, together with the World Federation of Hemophilia (WFH) and WFH USA, announced an extension of their support of the WFH Humanitarian Aid Program with an additional donation of up to 500 million IUs […]

Infusing Love: Pay It Forward

June 10, 2020

鈥淓veryone can be great because everyone can serve.鈥 鈥 MLK Jr. 鈥淪ervice to others is the rent you pay for your room here on earth.鈥 鈥 Mohammed Ali Volunteering is gift. It can be the best things you鈥檒l do 鈥 both for your community and you. For me, there are mental health benefits in getting […]

HFA Statement to the Community/Declaraci贸n de HFA a la comunidad

June 3, 2020

In this unprecedented moment in history as we grapple with a worldwide pandemic, we must also confront the reality of violence and injustice against people of color in our communities and across the nation. The bleeding disorders community knows all too well the effects of inequality, marginalization and the senseless loss of life. While we […]

Infusing Love: La casa y el sal贸n llenos del virus

June 3, 2020

  Un plato lleno de virus y un poco de brillantina es todo lo que se necesit茅 para explicar a mis ni帽as la importancia de lavarse las manos. Cuando mis hijas eran peque帽as enfatizaba fielmente en la importancia de lavarme las manos con agua y jab贸n. Teniendo en cuenta de que ellas tienen un trastorno […]

BioMarin Provides Update to Hemophilia A Clinical Development Program

June 2, 2020

The following is an excerpt from a press release from BioMarin. Read the press release in its entirety here. BioMarin Pharmaceutical Inc. announced an update to its previously reported results of an open-label Phase 1/2 study of valoctocogene roxaparvovec, an investigational gene therapy treatment for adults with severe hemophilia A. The data have been submitted […]

Washington Wire: May 2020

May 28, 2020

Click Below to Translate Page to Spanish. Federal rule allows health plans to discount manufacturer copay assistance. On May 7, 2020, the U.S. Department of Health and Human Services finalized a rule that affects individuals who rely on聽patient copay assistance programs. The HHS rule (the 鈥2021 Notice of Benefits and Payment Parameters,鈥 or NBPP) allows […]

Washington Wire: Abril 2020

May 20, 2020

Durante el mes de abril, la emergencia de COVID-19 continu贸 dominando las vidas de los estadounidenses y las agendas de los legisladores. Estas son algunas de las novedades del mes. Un cuarto proyecto de ley de alivio de COVID se convirti贸 en ley el 24 de abril. R. 266 repone el Programa de Protecci贸n de […]

Dr. Reddy’s Laboratories Announce Launch of Desmopressin Acetate Injection

May 20, 2020

The following is from a press release from Dr. Reddy’s Laboratories. Read the press release in its entirety here. Dr. Reddy鈥檚 Laboratories Ltd., along with its subsidiaries together referred to as 鈥淒r. Reddy鈥檚鈥 today announced the launch of Desmopressin Acetate Injection USP, 4 mcg/mL Single-dose Ampules, a therapeutic equivalent generic version of DDAVP (desmopressin acetate) […]

Infusing Love: The Overwhelmed Mom

May 20, 2020

When I received Hemophilia Federation of America鈥檚 Infusing Love: A Mom鈥檚 Blog schedule back in January for this year鈥檚 blogs, I thought, 鈥淥k I have plenty of time to think and write the best blog yet for me.鈥 Wrong鈥 As the months went on, the craziness with my boys鈥 school and extracurricular activities and sports, […]

Dear Addy: Cautious to Proceed

May 20, 2020

Dear Addy- I recently learned I am eligible to receive an Economic Impact Payment or 鈥渟timulus check鈥. While I have not received any funds yet, I have received several voicemails stating that I am required by law to provide personal banking information, my social security number and pay a fee before I can receive any […]

Novo Nordisk Notice on COVID-19, Rebinyn庐 and Laboratory Assays

May 19, 2020

Novo Nordisk recently distributed a notice relevant to its product Rebinyn庐,聽raising awareness that one-stage clotting assay results can be significantly affected by the type of activated partial thromboplastin time (aPTT) reagent used, which can result in over or under-estimation of Factor IX activity. The notice which was addressed to HTCs, physicians and other healthcare providers, […]

Mental Health Awareness Campaign: Celebramos el mes de la Concientizaci贸n Salud Mental.

May 15, 2020

隆Salud Mental es para todos! Mayo es el mes de la concientizaci贸n de la salud mental. Este mes sirve para concientizar e informar a el mundo entero de los desaf铆os de salud mental. Tambi茅n, de los esfuerzos que se est谩n haciendo. Reconocemos, que estamos enfrentando un tiempo de aislamiento y encierro y que es muy […]

uniQure Presents New Preclinical Data in Hemophilia A

May 15, 2020

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure N.V., a gene therapy company advancing transformative therapies for patients with severe medical needs, presented new preclinical data on its gene therapy candidates AMT-150 for Spinocerebellar Ataxia type 3, AMT-190 for Fabry disease, and AMT-180 […]

Word From Washington: HFA Joins With Patient Groups to Urge Supreme Court to Uphold Health Care Law

May 13, 2020

Patient and health advocacy groups representing millions of Americans with pre-existing conditions filed an聽amicus curiae or friend of the court brief urging the U.S. Supreme Court to uphold the Affordable Care Act in the case of聽California v. Texas (previously Texas v. United States). The case is on appeal from lower court decisions invalidating (in whole […]

Infusing Love: Her Wild Man

May 13, 2020

Sometimes I feel that Maddox doesn鈥檛 even have hemophilia, because he鈥檚 such a wild man, and responds so well to his new medication. At first, we were so scared as a family to make the switch. Understanding that every family is different, we didn鈥檛 want to be swayed in the wrong direction. We have seen […]

Word From Washington: HHS Finalizes Rule Allowing Insurers to Exclude Copay Assistance

May 8, 2020

Late yesterday, the U.S. Department of Health and Human Services finalized a rule that affects individuals who rely on patient copay assistance programs. The HHS rule (the 鈥2021 Notice of Benefits and Payment Parameters,鈥 or NBPP) allows health insurers to continue using accumulator adjusters. This means that a health insurer can exclude manufacturer copay assistance […]

Pfizer and BioNTech Dose First Participants in the COVID-19 Vaccine Development Program

May 7, 2020

The following is a press release from Pfizer. Read it in its entirety here. Pfizer Inc. and BioNTech SE announced the first participants have been dosed in the U.S. in the Phase 1/2 clinical trial for the BNT162 vaccine program to prevent COVID-19. The trial is part of a global development program, and the dosing […]

Infusing Love: Tomando Responsabilidad

May 6, 2020

Tomar con responsabilidad una situaci贸n dif铆cil no significa indiferencia. Yo tambi茅n como muchas de ustedes, quiero vencer mis miedos, ser positiva, y hacer frente a las adversidades con la mejor actitud. Pienso que la manera de hacerlo es educ谩ndome. He asistido a algunos cursos, conferencias, y grupos de apoyo que han ayudado mucho en mi […]

uniQure Announces Highlights of Recent Progress

May 1, 2020

The following is an excerpt from a press release from uniQure. Read the release in its entirety here. uniQure N.V., a gene therapy company advancing transformative therapies for patients with severe medical needs, reported recent progress across its business. 鈥淒espite the ongoing global crisis caused by the coronavirus pandemic, we ended the first quarter of […]


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