Donate

News & Perspectives

Infusing Love: A New Day Has Come

November 13, 2019

I never thought this day would come…. When Myles was first diagnosed with hemophilia A, I knew we had a long road ahead of us. Doctor appointments and worrying about safety both inside and outside of school, could always be scary. However, the scariest was the responsibility of making sure Myles always had the correct […]

Sangamo to Announce Gene Therapy and Ex Vivo Gene-Edited Cell Therapy Data at ASH

November 7, 2019

The following is an excerpt from a press release from Sangamo. Read the press release in its entirety here. Sangamo Therapeutics Inc., a genomic medicine company, announced that hemophilia A gene therapy clinical data and hemoglobinopathies ex vivo gene-edited cell therapy data will be featured in poster presentations at the 61st Annual Meeting of the […]

Sigilon Therapeutics to Present Preclinical Data on Rare Blood Disorders at ASH

November 7, 2019

The following is a press release from Sigilon Therapeutics. Sigilon Therapeutics announced it will present data at the American Society of Hematology Annual Meeting demonstrating that its novel Shielded Living TherapeuticsTM platform for rare bleeding disorders remains viable in animal models for at least six months. The data also demonstrate dose-responsive in vivoexpression of human coagulation […]

Infusing Love: Stand Up to Bullying

November 6, 2019

  Bullying has no shame. It shows no prejudice. Bullying affects anyone of any size, age, and ethnicity.  It affects all of us. When I watch grown people intentionally hurt each other with words and actions, it always surprises me. One day I asked a young lady why she was making fun of her coworker. […]

Washington Wire: October 2019

October 31, 2019

Open Enrollment begins for 2020 insurance plans. The Open Enrollment Period is a time frame each year when health insurance plans are required by law to accept applications from new plan enrollees regardless of their health history. This also is the time when you can choose to stay with your existing health plan if it is the right one […]

Dear Addy: 2020 Open Enrollment

October 30, 2019

Dear Addy, I keep seeing reminders about open enrollment beginning November 1, 2019. As a person with a bleeding disorder, what should I look for in an insurance plan? Signed, Investigating Insurance Dear Investigator, The Open Enrollment Period is a time frame each year when health insurance plans or HMOs (health maintenance organizations) are required by law to accept […]

Infusing Love: Keys to the Kingdom

October 30, 2019

Over the last several years, I have been focused on the idea of transition and independence as Thomas speeds through his adolescence. While he will always be my little boy, I simply have to face the facts that this six-foot, 16-year-old will be making decisions for himself and his healthcare in short order. There have […]

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 […]

Infusing Love: Stand Up to Bullying

October 23, 2019

  October is National Bullying Prevention Month. For older moms, we think of bullying happening at school and after school in the neighborhood. But the unfortunate reality is that there is now the addition of bullying at home through social media and texts.  Historically, many have referred to bullying as a “childhood rite of passage.” […]

Genentech Response to HFA-NHF Letter Regarding Particulate Matter in Hemlibra

October 17, 2019

On October 16, 2019, Genentech sent the following letter to HFA and NHF. Genentech’s letter responds to questions posed in the joint HFA-NHF letter of October 11, regarding reports of particulate matter in vials of Hemlibra. HFA and NHF will keep the bleeding disorders community informed as further information develops. Please note that HFA and […]

CSL Behring Announces Printing Misalignment for Humate-P

October 15, 2019

CSL Behring has advised HFA and NHF of a printing misalignment on the label of its Humate P product for von Willebrand disease. You can read CSL Behring’s statement, and see images of the product box, below. While the current Humate P notification is prompted by a printing error on the outside of the box, NHF […]

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’s recent announcement regarding reports of particulate matter in vials of Hemlibra. You can read comments on the statement from NHF’s Medical and Scientific Advisory Council (MASAC). Today HFA and NHF sent Genentech a letter with additional questions, which you […]

FDA Approves Octapharma’s Wilate for Hemophilia A in Adult and Adolescent Patients

October 9, 2019

The following is a press release from Octapharma. Read the press release in its entirety here. Octapharma USA today announced the U.S. Food and Drug Administration (FDA) has approved WILATE® for treatment of adults and adolescents with hemophilia A for routine prophylaxis to reduce the frequency of bleeding episodes and on demand treatment and control […]

Genentech Issues Statement on Hemlibra Particles; MASAC Responds

October 7, 2019

Today, Genentech provided the following statement regarding reports of particulate matter in vials of Hemlibra. You can read Genentech’s statement below, and can read comments on the statement from NHF’s Medical and Scientific Advisory Council (MASAC). The events of the past several months, including today’s announcement by Genentech, underscore the importance of the joint Safety […]

Mes de la Herencia Hispana: La Intimidad en Pareja

October 7, 2019

Por: Andy Anderson Para ¿Mujeres con trastornos hemorrágicos? ¿Parejas donde los hombres tienen trastornos hemorrágicos? ¿Padres sin trastorno hemorrágico pero un niño o niña que sí tiene un trastorno hemorrágico? Es su derecho decidir cómo, cuándo, por qué y a quién divulgar detalles sobre su estado de salud; esto incluye amistades, así como relaciones románticas […]

HFA & NHF Discuss Bayer Recall with FDA

October 7, 2019

HFA and NHF are pleased to share a brief update with the community concerning a recent meeting we had with the FDA as well as a number of additional resources that the FDA provided after the call.  HFA and NHF will continue to update the bleeding disorders community as any further information develops. Please note […]

Infusing Love: Pride and Perseverance

October 3, 2019

  My mother was called a “bleeder” when I was growing up. I remember she almost died from a hemorrhage after surgery and her nose constantly needed to be packed at the emergency room due to nose bleeds. I never bled like her and never considered I might have something too. I went 36 years […]

HFA & NHF Collaborate on Safety Concerns

October 1, 2019

  Recently there has been a lot of news related to the safety of the bleeding disorders community. HFA & NHF are working together to address the issues important to patients. Please read for further information on how you can provide your thoughts and concerns and to learn more about our plans for moving forward.

Washington Wire: September 2019

September 30, 2019

The drug pricing debate in Washington resumed when Congress returned from its summer recess – though many observers question whether Congress will be able to pass legislation this year, due to policy disagreements between the majority and minority parties; the short period of time available before the 2020 elections; and the spillover effects of the impeachment […]

Bayer Responds to HFA-NHF Letter

September 27, 2019

On Sept. 27, 2019, Bayer sent the following letter and pharmacovigilance summary to HFA and NHF. Bayer submitted these materials in response to a joint HFA-NHF letter, part of the ongoing dialog over Bayer’s distribution and subsequent recall of two lots of improperly labeled, expired clotting factor. Please note that NHF and HFA do not recommend, endorse […]

Genentech Patient Foundation Responds to HFA-NHF Letter

September 27, 2019

On September 24, 2019, HFA and NHF sent a letter to Genentech and MedVantx regarding the shipment of incorrect length injection needles to patients who receive Hemlibra through the Genentech Patient Foundation. The Genentech Patient Foundation responded to our inquiries by letter dated September 25, 2019. You can read their response here. HFA and NHF will update the […]

Infusing Love: La comunicación con nuestros hijos e hijas

September 25, 2019

  Tener una buena comunicación con nuestros hijos e hijas no siempre es fácil.  Para esto es imprescindible saber estilos adecuados de comunicación para conocer a nuestros retoños más, para saber lo que piensan, para entenderlos más y para saber cómo se sienten.  De hecho, la comunicación entre padres e hijos es esencial para fomentar […]

Joint Statement #1 on Genentech Patient Foundation/Medvantx Needle Error

September 24, 2019

Late in the day on Friday, September 20, 2019, Genentech informed HFA and NHF that a contracted specialty pharmacy, Medvantx, had shipped incorrect length injection needles to patients who receive Hemlibra through the Genentech Patient Foundation. HFA and NHF posted that notice on September 21st. Today we followed up with a letter to Genentech and […]

Mes de la Herencia Hispana: Salud Mental en Hombres Latinos con Hemofilia, una Realidad Invisible

September 24, 2019

En pleno siglo 21 luchamos con la pobre educación y conocimiento que se tiene sobre la Hemofilia u otras enfermedades crónicas padecidas en hombres. A esto le sumamos las creencias sobre roles y masculinidades que invitan a los hombres a no atender su estado de salud emocional. Existe un discurso social predominante a través de […]

Joint Statement #5 on Recall of Bayer Kogenate® FS Lots

September 23, 2019

Bayer announced the recall of two lots of Kogenate® FS antihemophilic factor (recombinant) 2000 I.U. vials on July 19, 2019. Bayer announced that 3000 I.U. of one product (Jivi), past its expiration date, had been mislabeled as another product (2000 I.U. of Kogenate FS) and distributed to the public for six months. This is a deeply […]

Genentech Patient Foundation/Medvantx Announce Ancillary Safety Issue

September 21, 2019

HFA has received the following notice from Genentech regarding the shipment of incorrect length injection needles to patients who receive Hemlibra through the Genentech Patient Foundation: “We were recently informed that ancillary supplies shipped by a specialty pharmacy, Medvantx, to a specific group of patients receiving Hemlibra through the Genentech Patient Foundation contained incorrect length injection […]

Infusing Love: Remembering Sept. 11, 2001

September 18, 2019

Ver abajo para español I’m pretty sure everyone in Puerto Rico remembers where they were when they heard of the planes crashing on the twin towers in New York. I was at the Conservatory of Music of Puerto Rico, studying for my second bachelor’s degree in music. I was sitting in the hallway trying to […]

FDA Identifies Biomarker for Immune Response to FVIII Products Used to Treat Hemophilia A

September 17, 2019

The following is a press release from the FDA. Read the press release on the FDA website here. Scientists at the U.S. Food and Drug Administration developed a technique that enables them to determine whether immune system cells called dendritic cells appear primed to trigger the production of antibodies against Factor VIII (FVIII) products used to […]

Mes de la Herencia Hispana: La menstruación es un proceso natural

September 16, 2019

La menstruación es un proceso natural como cualquier otro. Por: Andy Anderson y Martha Boria “Ahora eres una mujer”. “Aquí están las toallas higiénicas”. “Puedes sostener una toalla de agua caliente en el estómago por los dolores”. ¿Suena esto familiar? Para muchos de nosotros, hablar de períodos era solo algo que podíamos hacer con mamá. […]

Dear Addy: Public Charge Rule

September 16, 2019

Dear Addy, I’ve 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 información en español, haga clic aquí. Thanks for reaching out about this important and developing issue. As you may […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.