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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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

NHF Plans to go Virtual with Annual Meeting

May 1, 2020

The following is a statement from the National Hemophilia Foundation regarding their annual meeting. The National Hemophilia Foundation鈥檚 priority has always been the health and safety of the bleeding disorders community. As the COVID-19 pandemic unfolds, it is clear that in the face of an unprecedented situation, we need to make difficult decisions to protect […]

Washington Wire: April 2020

April 30, 2020

Over the month of April, the COVID-19 emergency continued to dominate Americans鈥 lives 鈥 and lawmakers鈥 agendas. Here are some of the month鈥檚 developments. A fourth COVID relief bill was signed into law on April 24th. R. 266 replenishes the Paycheck Protection Program (established in the March CARES Act but quickly depleted) with an additional […]

HFA & NHF Release Preliminary Executive Summary of Safety Summit

April 30, 2020

Public Comments Sought Over Next 30 Days The National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) are seeking comments from the bleeding disorders community on the executive summary of the NHF/HFA Safety Summit convened in Washington, DC, on January 29-30th, 2020. The summit brought together stakeholders from across the bleeding disorders community, including […]

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 […]

Infusing Love: When The Time Comes

April 29, 2020

Our children face difficult things in their life on a daily basis. We teach them, we guide them and then pray it all works out. When they are little, we can control situations and speak for them when we believe we know our children better than anyone in the ER. We are the MOM! We […]

Washington Wire: Marzo 2020

April 22, 2020

COVID-19 cambi贸 la vida de pr谩cticamente todos en el transcurso del 煤ltimo mes, y parece probable que las interrupciones en el trabajo, la escuela, la atenci贸n m茅dica y la vida cotidiana en todo el pa铆s contin煤en por un tiempo m谩s. En medio de esta perturbaci贸n, HFA quiere asegurarle que continuaremos sirvi茅ndole y apoy谩ndole. Estamos trabajando […]

Infusing Love: Making Memories

April 22, 2020

  The Infusing Mom bloggers have a set schedule on when articles are due each week. As my date drew near, I believed I had my topic. I had been scrolling through my Facebook feed and noticing pictures of kids whose parents had captured the fun they had that day. My kids are older, and […]

Voluntary Recall Notice: Saline Flush Syringes Recalled

April 21, 2020

The following is information from BD. BD is conducting a voluntary medical device recall for multiple lots of the BD PosiFlush™ SF (Sterile Field) Saline Flush Syringe 10mL identified in the Table above and Attachment A. This product has been confirmed to exhibit holes in the packaging, which impacts package integrity and potentially compromises a […]

Dear Addy: Seeking Assistance

April 20, 2020

Dear Addy- Like many others, I have been laid off of work due to COVID-19. I鈥檓 supposed to receive pandemic unemployment assistance through the CARES Act, but it鈥檚 not in my bank account yet and I have bills to pay. Can HFA鈥檚 Helping Hands program help? Signed, Need a Little Help From My Friends Dear […]


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