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Genentech Launches New Hemophilia Website

September 25, 2020

The following information has been provided by Genentech. “Genentech recently launched a new聽website聽GenentechHemophilia.com, dedicated to supporting the Hemophilia community. Here you can watch videos, read articles and learn how Genentech is committed to advancing all aspects of life with hemophilia A. Genentech supports the Hemophilia community through a variety of ways including a web series […]

STATE OF THE STATES: Summer 2020

September 22, 2020

Policy and advocacy work is increasingly important at the state level. In an effort to keep you informed about the work happening on the ground at the local level, HFA is debuting a quarterly update, “State of the States.” Stay up-to-date and read about the work happening close to you! The COVID emergency has upended […]

Genentech Provides Update to US District Court Decision

August 31, 2020

The following is an excerpt from an update from Genentech. Read the update in its entirety here. Genentech has provided a statement surrounding an August 27, 2020 US Federal Circuit Court of Appeals ruling which 聽reverses a previous ruling by the US District Court. In December 2018, the US District Court issued a patent interpretation […]

2020 Award Recipients

August 29, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals: 聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Watch the 2020 Awards Ceremony Here!

Former Board Chair Recognition, 2020 | Josh Hemann

August 26, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals. Josh Hemann Former Board Chair Recognition HFA recognizes former board chairs for their […]

Volunteer of the Year, 2020 | Tracy Cleghorn

August 26, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals. Tracy Cleghorn Volunteer of the Year The Staff at HFA looks forward to […]

Member Organization Spotlight Award, 2020 | Hemophilia of South Carolina, Sue Martin, Executive Director

August 26, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals. Hemophilia of South Carolina, Sue Martin, Executive Director Member Organization Spotlight Award HFA […]

Ron Neiderman Humanitarian Award, 2020 | Rich Pezzillo

August 26, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals. Rich Pezzillo Ron Neiderman Humanitarian Award This award is for extraordinary and inspirational […]

Special Service Recognition, 2020 | Laveane Lovelady

August 26, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals. Laveane Lovelady Special Service Recognition This award was chosen by HFA staff in […]

It Takes a Village Award, 2020 | Harvey Gates Sr.

August 26, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals. Harvey Gates Sr. It Takes a Village Award This award is provided to […]

Terry Lamb Health and Wellness Award, 2020 | Chris Bombardier

August 26, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals. Chris Bombardier Terry Lamb Health and Wellness Award This award is for exceptional […]

Charles Stanley Hamilton Legacy Award, 2020 | Carl Weixler

August 26, 2020

Each year Hemophilia Federation of America honors the service of special individuals who have gone above and beyond in support of the bleeding disorders community. HFA鈥檚 2020 awards were presented during a virtual ceremony on Aug. 25, 2020. HFA celebrates these individuals. Carl Weixler 2020 Charles Stanley Hamilton Legacy Award This award is for extraordinary […]

Spark and Roche Update on Hemophilia Gene Therapy Program

April 22, 2020

The following is an update on the Spark and Roche gene therapy program. “Together, Spark and Roche remain fully committed in our objective to meet the needs of the hemophilia community by developing gene therapies for hemophilia A that, with the lowest effective dose and optimal regimen to manage the immune system response, demonstrate safety, […]

Word From Washington: Pandemic Unemployment Compensation, Supplement Security Income & Medicaid

April 14, 2020

HFA has received several questions regarding whether the enhanced unemployment benefits that the federal government provides during the聽national coronavirus emergency could adversely impact people who have Medicaid coverage by virtue of the fact that they receive disability benefits under the Supplemental Security Income (SSI) program. SSI recipients are allowed to work in limited situations.聽 If […]

HFA Earns GuideStar’s Highest Level of Recognition

April 13, 2020

Hemophilia Federation of America is pleased to announce the organization has earned the 2020 Platinum Seal of Transparency, the highest level of recognition offered by GuideStar, a service of Candid. By sharing metrics that highlight progress HFA is making toward its mission, the organization is helping donors move beyond simplistic ways of nonprofit evaluation. With […]

Washington Wire: March 2020

March 31, 2020

COVID-19 upended the lives of virtually everyone over the course of the last month 鈥 and it appears likely that nationwide disruptions to work, school, healthcare, and everyday life will continue for some time longer. Amidst this upheaval, HFA wants to reassure you that we will continue to serve and support you. We are working […]

ACTUALIZACI脫N # 2 DE CORONAVIRUS (2019-NCOV): DECLARACI脫N DE MASAC

March 19, 2020

El 3 de marzo de 2020, el Comit茅 Asesor M茅dico y Cient铆fico (MASAC) de NHF public贸 una carta a la comunidad sobre el brote de coronavirus en evoluci贸n. La carta de MASAC busca “proporcionar alguna orientaci贸n provisional para la comunidad de trastornos de sangrados”, dirige a las personas a la p谩gina web del CDC como […]

ACTUALIZACI脫N # 3 DE CORONAVIRUS (2019-NCOV)

March 19, 2020

El 11 de marzo de 2020, la Organizaci贸n Mundial de Salud anunci贸 que clasificar铆a a COVID-19 como una pandemia, y repiti贸 su llamamiento a los pa铆ses para que tomen medidas urgentes y agresivas para controlar la propagaci贸n del virus. Tambi茅n el 11 de marzo de 2020, PPTA PPTA actualizo su declaraci贸n sobre el coronavirus y […]

COVID-19 and Bleeding Disorders: Frequently Asked Questions

March 17, 2020

Many bleeding disorders community members are concerned about medical care, doctor visits, and how living with a bleeding disorder is being complicated by COVID-19. We address some of the most frequently asked questions: Q: We have an appointment scheduled with our HTC next week. Should we still go? A:聽All patients/caregivers should contact their HTC or […]

CORONAVIRUS (COVID-19) 鈥 QU脡 EST脕 HACIENDO HFA

March 13, 2020

Estamos haciendo todo lo posible para actualizar esta p谩gina lo m谩s r谩pido posible. Para obtener la informaci贸n m谩s actualizada, consulte la p谩gina en ingl茅s de COVID-19. Declaraciones y Actualizaciones Durante este tiempo de noticias que cambian r谩pidamente en torno al brote de COVID-19, HFA continuar谩 publicando actualizaciones e informaci贸n sobre COVID-19 y sus efectos en […]

CSL Behring Update COVID-19

March 13, 2020

CSL Behring has added a statement to their website regarding the measures the company is taking in the wake of the聽2019-nCoV (novel coronavirus) outbreak.

Coronavirus (2019-nCoV) Update #3

March 12, 2020

On March 11, 2020, the World Health Organization announced that it is classing COVID-19 as a pandemic, and repeated its call for countries to take urgent and aggressive action to control the spread of the virus. Also on March 11, 2020, PPTA updated its statement on coronavirus and the safety of plasma protein therapies, noting […]

Best of You: Journey to Healthier Joints Challenge

January 15, 2020

This fall Hemophilia Federation of America kicked off Your Journey to Healthier Joints with six member organizations fielding teams of up to 10 men with bleeding disorders to participate in an eight-week activity challenge. The challenge was part of HFA鈥檚 cooperative agreement with the Centers for Disease Control and Prevention to promote joint health in […]

Dear Addy: Medicare Open Enrollment 2020

October 23, 2019

Dear Addy, I am a Medicare beneficiary weighing my plan options for 2020. What do I need to know about choosing a plan for the coming year? Medicare Beneficiary Dear Beneficiary, Every year Medicare open enrollment runs from Oct. 15 through Dec. 7. This is the time of year when you can decide to stay […]

Joint Letter from HFA-NHF to Genentech Regarding Particulate Matter in Hemlibra

October 11, 2019

Hemophilia Federation of America and National Hemophilia Foundation continue to follow up on issues arising from Genentech鈥檚 recent announcement regarding reports of particulate matter in vials of Hemlibra. You can read comments on the聽statement from NHF鈥檚 Medical and Scientific Advisory Council (MASAC). Today HFA and NHF sent Genentech a letter with additional questions, which you […]

Dear Addy: Public Charge Rule

September 16, 2019

Dear Addy, I鈥檝e seen HFA post on social media about changes to the public charge rule. What are the changes and how could they affect the bleeding disorders community? Signed, Concerned Advocate Dear Advocate, Para obtener informaci贸n en espa帽ol, haga clic aqu铆. Thanks for reaching out about this important and developing issue. As you may […]

Hemophilia Federation of America names VP of Advancement as Interim President and CEO

September 4, 2019

Sept. 3, 2019 After the recent resignation of long-time President and CEO, Kimberly Haugstad, Hemophilia Federation of America has named its Vice President of Advancement, Sharon Meyers, as interim President and CEO. Meyers, who began her role on Sept. 1, brings a wealth of experience to the position while HFA鈥檚 board of directors finds a […]

Joint Statement #4 on Recall of Bayer Kogenate庐 FS Lots

August 22, 2019

Hemophilia Federation of America and National Hemophilia Foundation continue to follow up on issues arising from Bayer鈥檚 distribution of mislabeled, expired clotting factor and subsequent recall of that product. The most recent set of joint HFA-NHF inquiries to Bayer focused on the short- and long-term medical consequences for affected patients. Bayer today released this response […]

Joint Statement #3 on Recall of Bayer Kogenate庐 FS Lots

August 12, 2019

We recognize the recent recall from Bayer has caused deep concern and has been unsettling for many in the bleeding disorders community. As part of our ongoing discussion with Bayer, Hemophilia Federation of America and National Hemophilia Foundation have received the following letter and update regarding the recall of Kogenate FS. This letter includes Bayer鈥檚 […]

HFA Awarded PCORI Grant to Engage Women in Research

July 25, 2019

Hemophilia Federation of America has received a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute for its FIRST (Females in Research Sharing and Translation) Project to improve opportunities for women to be engaged in patient-centered research. The capacity-building grant will support HFA鈥檚 FIRST Project which will begin by identifying how women are […]


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