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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 […]

Word From Washington: HFA Signs On to Letter Opposing Medicaid Block Grants

July 18, 2019

Patient Groups Express Strong Opposition to Medicaid Block Grants Proposals for Block Grants or Per Capita Caps in Medicaid Would Harm Patients with Serious and Chronic Health Conditions Today, 27 patient groups submitted a letter to Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma expressing strong opposition to policies that would allow states […]

SPECIAL PRESIDENT AND CEO ANNOUNCEMENT

July 16, 2019

Dear Bleeding Disorders Community 鈥 I want to let you know that I will be stepping down from HFA as your President and CEO at the end of August. Leaving HFA has been an incredibly difficult decision I have been wrestling with for about a year.聽 I love HFA but ultimately this is just the […]

Infusing Love: 隆Me logr茅 encontrar a m铆 misma!

May 29, 2019

  This blog is translated in English below. Este pasado d铆a de las madres celebr茅 mi a帽o n煤mero 23 de ser madre. 隆No s茅 ni como esto pas贸 tan r谩pido! En una pesta帽ar de ojos mis hijas han crecido y se han independizado, pero soy una mam谩 muy feliz. Criar a hijas involucra mucho tiempo […]

Infusing Love: Letting Him Do It His Way

April 24, 2019

  For some of us hemophilia Moms we went through the time where we had to hold down our son to give him his factor or buy out the dollar store for him to be rewarded for his cooperation! Finally, we get to the point when holding down or rewards are no longer part of […]

Sanofi Genzyme Launches Innovative and Educational Audio Adventure Series for People Treated with ALPROLIX庐

March 15, 2019

The following is a press release from Sanofi Genzyme. Find the full press release here. Sanofi Genzyme, the specialty care business unit of Sanofi, announced the launch of a first-of-its-kind audio adventure series designed to provide an engaging and educational infusion experience for ALPROLIX庐 [Coagulation Factor IX (Recombinant), Fc Fusion Protein] patients and their caregivers. […]

Washington Wire: January 2019

January 31, 2019

FEATURED STORY What to Watch in the States in 2019 鈥 State Medicaid Trends Legislative sessions have begun in all but four states (Alabama, Florida, Louisiana and Nevada begin sessions in the months ahead).聽 As lawmakers begin to tackle the numerous issues they need to address in the coming months, let鈥檚 look at what to […]

Mental Health Awareness Campaign: Difficult Holidays and Year End

December 27, 2018

  Even if you鈥檝e been feeling okay, the end of the year can bring mental health challenges for anyone of any age.聽 It鈥檚 no coincidence that in much of the United States the winter months can be some of the darkest, longest and coldest. The way many people cope is to celebrate the traditions of […]

Dear Addy: Engaging in Research

October 1, 2018

Dear Addy, I watched a few of HFA鈥檚 PRIDE Project webinars. Can you explain to me how engaging in research will make me a better advocate? Signed, Curious about Research Dear Curious, It鈥檚 great to hear that you watched some of the PRIDE Project webinars, as those webinars provide an introduction to and basic training […]

!Mes nacional de la Herencia Hispana! 2018

September 13, 2018

!Mes Nacional de la Herencia Hispana!聽Publicaci贸n de la semana cuatro Alguna vez se ha preguntado como sabe su doctor que el medicamento que le est谩 recentando es efectivo y adecuado para tratar su condici贸n鈥 A trav茅s de la investigaci贸n se informan decisiones sobre medicamentos, as铆 como otras preguntas sobre la eficacia, seguridad e idoneidad de […]

Washington Wire: August 2018

August 31, 2018

Featured Stories: HFA, along with other patient groups, continues to argue against restrictive Medicaid eligibility policies. HFA has written before about a new federal policy that allows states to cut off Medicaid coverage for adults who don鈥檛 meet state work requirements. The US Centers for Medicare and Medicaid Services has so far approved work requirements […]

Dear Addy: Virtual Hill Day

June 11, 2018

Dear Addy, I saw a post on HFA鈥檚 Facebook page about a Virtual Hill Day on June 12. Can you tell me more about this and how people outside of D.C. can be involved? Signed, Virtual Visitor Dear Visitor, Every year, HFA hosts a fly-in for members of the bleeding disorders community to come to […]

Infusing Love: Your Spark Is My Why

April 25, 2018

Every year at Symposium, there is some special moment that defines that year鈥檚 event for me. As we kick off our 2018 event tomorrow, I鈥檓 reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.) 聽 This picture encapsulates our […]

Dear Addy: Op-ed

March 22, 2018

Dear Addy, I鈥檝e heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I鈥檇 like to submit a piece during Bleeding Disorders Awareness Month. Can you offer tips for submitting my story? Signed, Ready-to-Write Dear Writer, Writing an op-ed or opinion piece is a great way to […]

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February 23, 2017

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