Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Responding to the ongoing pandemic, the federal government has opened a special enrollment period (SEP) in the Healthcare.gov insurance marketplaces. This enrollment opportunity will run from Feb. 15聽to May 15聽in the 36 states that use the Healthcare.gov enrollment platform (most of the remaining states have already announced that they, too, will open a new 2021 […]
Lower Courts Have Ruled Work Requirements Would Reduce, Rather than Expand, Access to Health Care Fifteen groups representing patients, people with disabilities and health care professionals filed an amicus curiae – or friend of the court 鈥 brief today urging the U.S. Supreme Court to protect access to health coverage as it considers the validity […]
Como saben soy mama de un ni帽o de 11 a帽os con hemofilia. Cuando mi ni帽o fu茅 creciendo empez贸 a aumentar de peso y en ocasiones presentaba dolores en sus tobillos. Yo como mam谩 s煤per protectora, (s铆 lo acepto, tengo que trabajar conmigo misma para no transmitirle miedo a mi ni帽o) no consideraba ning煤n deporte como […]
As the nation continues to navigate concerns with travel, safety and vaccinations with COVID-19, Hemophilia Federation of America announces its annual patient-centered education Symposium will be hosted virtually again in 2021. Originally set to take place in San Antonio in October of 2021, the annual conference is being reimagined for a virtual event, and dates […]
During Black History Month, Hemophilia Federation of American would like to shine a light on Black healing and mental health in the bleeding disorders community. In addition to the emotional impacts of chronic illness and living in a pandemic, Black community members may also be experiencing layers of individual and intergenerational trauma from racism. There […]
The following is an excerpt from a press release from Octapharma. Read the full press release here. Octapharma announced the final results from the NuProtect study on the immunogenicity of Nuwiq庐 in previously untreated patients with severe hamophilia A have been published in the medical journal Thrombosis and Haemostasis (Liesner RJ et al. 鈥淪imoctocog Alfa […]
Hemophilia Federation of America is excited to now offer video responses to Dear Addy questions. While the United States grapples with issues of聽diversity, equity and inclusion, and improvements have been made throughout the country, a community member inquired what HFA is doing to address diversity, equity and inclusion. Senior Manager of Policy and Advocacy, Kimberly […]
In the spring of 2020, the usual way of life for the entire nation changed when the COVID-19 pandemic hit the United States. While Hemophilia Federation of America quickly responded by providing resources and information to the bleeding disorders community, the organization also wanted to better understand how the community was affected. HFA conducted an […]
It鈥檚 been a year since the first case of COVID-19 was reported in the United States. The ever-evolving coronavirus situation can be a bit intimidating. With social distancing and quarantine are becoming frequent vocabulary words in our everyday conversations. The whole thing can feel downright overwhelming. Answer me this question鈥hen did feeling exhausted and overwhelmed […]
Ferring Pharmaceuticals has provided an update to HFA and NHF regarding the availability of Stimate庐 (desmopressin acetate, 1.5 mg/1 mL) Nasal Spray (鈥淪timate鈥).聽 The letter addresses the investigation completed by Ferring; the investigation determined that the “underlying聽cause for the out-of-specification results as an issue with the tightness of the seal of the bottle.” Furthermore, the […]
Hemophilia Federation of America is excited to now offer video responses to Dear Addy questions. We recently had a community member ask for guidance on the COVID-19 vaccine. Kimberly Ramseur, HFA鈥檚 Senior Policy Manager, provides some more information.
Mi esposo y yo nunca pensamos que terminar铆amos el uno con el otro como compa帽eros de vida. Ten铆amos en com煤n que los dos est谩bamos haciendo segundos bachilleratos en m煤sica en el Conservatorio. Fue all铆 donde nos conocimos, pero en todo lo dem谩s, parec铆amos ser totales opuestos. A pesar de mi estatura sobre promedio, yo era […]
The 2021 federal health policy outlook started to come into sharper focus in early January, when runoff elections for both of Georgia鈥檚 Senate seats were decided. The election of Democratic Sens. Warnock and Ossoff means that the U.S. Senate is split 50-50 between the parties, with the Democrats holding the slimmest of majorities (Vice President […]
Watch the webinar Hemophilia Federation of America hosted an excellent line-up of experts, including well-known epidemiologists from NIH and UCLA, as well as leading HTC medical professionals, who answered questions about the COVID-19 vaccination in those with bleeding disorders during the COVID-19 Forum on Jan. 26, 2021. The panel included: 聽 鈥 Duc “Bobby” Tran, […]
CSL Behring has announced a voluntary聽pharmacy level聽product recall of聽one batch of Mononine Coagulation Factor IX (Human), a plasma-derived product used to treat hemophilia B. CSL Behring鈥檚 notification states, 鈥淧atients can continue to use product they may have. Although the potential for safety risk to patients is considered low, it cannot be fully excluded.鈥 The affected […]
Now Available On-Demand Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein. This means that the blood does not clot normally. When blood cannot clot properly, excessive bleeding (external and internal) occurs after any injury or damage. Patients and […]
隆Hola, mis queridas madres y Feliz a帽o nuevo para todas! 驴Has notado el cambio en las preferencias en alimentos en los 煤ltimos a帽os? Hoy les hablar茅 de lo beneficioso que es comer saludable.聽 De porque tener h谩bitos alimentarios saludables nos alarga la vida para disfrutar a nuestras futuras generaciones. Nuestros h谩bitos alimentarios, en gran medida, […]
State Election Results Republican dominance in state elections could hinder new Democratic health initiatives Going into the 2020聽election, Democrats expected a 鈥渂lue wave鈥 at the state level that would build upon substantial gains in 2018, when they won back most of the record number of legislative seats they had lost since 2010.聽 Democrats had high […]
Hemophilia Federation of America is appalled by the recent violence at the United States Capitol. Each time our community has visited the Capitol to advocate on behalf of bleeding disorders, it has been an honor and a privilege to be a part of the democratic process set forth in the Constitution. However, the events showed […]
The staff of Hemophilia Federation of America and Infusing Love: A Mom’s View bloggers extend condolences to Maryann on the death of her son, Max. There are times as a hemophilia mom that you feel as though you can handle anything, like you could take on the world and make it a better place.聽Then there […]
As we enter the new year, there are good reasons to hope the U.S. may soon round the corner on COVID-19. In the meantime, though, we all still need to follow the guidelines of our public health authorities: stay home if sick, practice social distancing, avoid indoor settings, wear masks, and wash our hands. Please […]
隆Saludos nuevamente a todas las extraordinarias mam谩s de nuestra comunidad, un fuerte abrazo desde la distancia! Para los que no me conocen, tengo un ni帽o de 11 a帽os con hemofilia A, que se llama Iv谩n Manuel.聽Hoy les escribo, pensando en los diferentes retos que esta pandemia nos ha tra铆do a nuestras vidas. Desde los estudios […]
The World Federation of Hemophilia, National Hemophilia Foundation and the聽European Haemophilia Consortium have announced COVID-19 vaccination guidance for people with bleeding disorders. The following is from a press release from WFH. Read the press release in its entirety here. People with bleeding disorders are not at greater risk of contracting COVID-19 or developing a severe […]
Dear Addy, I鈥檓 seeing a lot about the 2020 Election results and it is all very confusing. Does HFA have a comprehensive resource that I can use to better understand the outcomes of this year鈥檚 election. Signed, Dear Constituent, Due to COVID-19, in some states the manner in which people voted may have changed to […]
The following is an excerpt from a press release from uniQure. Read the update in its entirety聽here. Today uniQure announced a clinical hold by the U.S. Food and Drug Administration (FDA) in its聽phase III HOPE-B: Trial of AMT-061 in Severe or Moderately Severe Hemophilia B Patients. Per uniQure鈥檚 statement: 鈥淭he clinical hold was initiated following […]
The following is a press release from Sanofi. Read the press release in its entirety here. Sanofi will resume fitusiran dosing in ongoing U.S. adolescent and adult clinical studies. Fitusiran is an investigational, small interference RNA therapy in development for the treatment of people with hemophilia A or B, with or without inhibitors. Sanofi鈥檚 first […]
The following is an excerpt from a press release from Pfizer. Read the full press release here. Pfizer Inc. and Sangamo Therapeutics Inc., a genomic medicines company, 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. These data […]
The following is an excerpt from a press release from uniQure. Read the full press release here. uniQure,聽a gene therapy company advancing transformative therapies for patients with severe medical needs, today announced the late-breaking presentation of initial data from its pivotal, Phase III HOPE-B gene therapy trial of etranacogene dezaparvovec, an investigational adeno-associated virus five […]
Hola, mis amigas de Infusing Love Moms Blog. Soy Ana, madre de un hijo con hemofilia Tipo B, deficiencia de Factor IX moderado y vivo en El Paso, Texas. Hoy quiero platicar con ustedes de el amor, el agradecimientoy el perd贸n. El amor es, quiz谩, el sentimiento mas hermoso que el ser humano pueda experimentar. […]
More than a dozen patient groups representing millions of Americans with serious and chronic health conditions are urging the U.S. District Court for the Southern District of New York to preserve protections in the Affordable Care Act (ACA) for lesbian, gay, bisexual, transgender and queer (LGBTQ) patients receiving health care services and restore translation notices […]
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