Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Deadline to Apply: Friday, April 30 Could you use $1000 gain a skill or certification to help you get a job? Are you an adult (age 18 – 64) with a bleeding disorder? You may be eligible for an HFA Job Readiness Grant! From bookkeeping to blogging, Scrum Master to Salesforce Administrator, coder to Certified […]
Updates During this time of rapidly-changing news surrounding the COVID-19, HFA聽will publish information and resources about to assist our bleeding disorders community. Vaccinations HFA Financial Assistance Other Resources Fraud Alerts Medical, Industry and Product News
Carrie Koenig, Programs Director at Hemophilia Federation of America, stepped outside her role as staff of HFA and used her experience as a mom of a child with hemophilia to write an article, which appeared in The Daily Record in Maryland on Feb. 18, 2021. Read Carrie鈥檚 piece: In addition to the devastating health impact […]
COVID relief legislation makes health coverage more accessible and affordable On March 11, 2021, President Biden signed the $1.9 trillion American Rescue Plan Act into law. This sweeping measure provides economic relief to individuals, families, businesses, schools, and state and local governments. The law offers new incentives for holdout states to expand their Medicaid programs […]
The American Rescue Plan (ARP), signed into law on March 11, 2021, provides new opportunities to get health insurance coverage, and/or to reduce the cost of your premiums. Review your coverage now to make sure you are maximizing your benefits under the new law! WHO SHOULD REVIEW THEIR COVERAGE? Anyone who is currently uninsured or […]
Hemophilia Federation of America (HFA) is pleased to offer free Mental Health First Aid training through an internationally renowned program by the National Council for Behavioral Health as part of HFA’s 2021 Mental Health and Wellness Initiative. HFA will be offering four trainings throughout 2021 for bleeding disorders community members ages 18 and over. The […]
Thirty patient groups, representing millions of Americans who live with pre-existing conditions, published a new report that describes the risks patients face when they enroll in non-compliant, substandard health insurance products. The report calls on federal and state lawmakers to take immediate action to limit the proliferation of these inadequate health plans. The report, Under-Covered: […]
The following is an excerpt from a press release from Sanofi. Read the full press release here. The National Organization for Rare Disorders (NORD庐)聽announced the聽findings of a new study that details聽the聽number聽of聽orphan products,聽generics and biosimilars聽available to treat rare diseases.聽NORD聽commissioned聽Avalere to conduct聽the聽analysis聽to examine if聽laws and regulations are聽helping to聽bring new treatments聽to market聽for rare disease patients.聽 According to the聽report,聽the […]
Hemophilia Federation of America condemns and denounces all acts of racism, xenophobia and intolerance against the Asian American and Pacific Islander community. We stand with our AAPI community against the alarming rise in violence they have endured. HFA remains committed to promoting racial and social equity, standing up for our AAPI staff and community members, […]
All ACA Marketplaces Create New Special Enrollment Periods Due to COVID-19 All 15 of the state-based Marketplaces (SBMs) created pursuant to the Affordable Care Act have established a COVID-19 Special Enrollment Period for 2021 following the Biden Administration鈥檚 decision to reopen the federally-facilitated Marketplace (FFM) from Feb. 15 through May 15. SBMs can create their […]
Hemophilia Federation of America will host the Mental Health Providers Forum at 7 p.m. ET on March 25, featuring an excellent panel of mental health professionals discussing mental health topics discovered to be important to the bleeding disorders community. During the live online session, these four esteemed mental health experts from around the country will […]
Two of America鈥檚 top leaders and advocates for the bleeding disorders community will keynote Central California Hemophilia Foundation鈥檚 annual Industry Symposium and World Hemophilia Day celebration on Saturday, April 17 from 9 a.m. to 3 p.m. Dr. Meyers, who has an extensive background in nonprofit leadership and fundraising, has been in her CEO position with […]
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 […]
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