HFA News

Volunteer Spotlight: Award Winner Unites Community

April 21, 2017

In conjunction with Volunteer Appreciation Month, we are highlighting volunteers who help to make the bleeding disorders community inclusive and informative. Today, we are proud to recognize one of our recent award winners at our 2017 Symposium, Darcy Zwier! The “It Takes a Village”聽award is provided to an individual who goes above and beyond in […]

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress

July 21, 2016

HFA to Present CHOICE Project Data at World Federation of Hemophilia World Congress 聽The CHOICE Project was a first-of-its-kind data collection from people with hemophilia and other bleeding disorders. FOR IMMEDIATE RELEASE: July 21, 2016 Contact: Sonji Wilkes (202)-675-6984 or email at Hemophilia Federation of America (HFA) announced today that it will present new […]

HFA Continues Initiative with Centers for Disease Control and Prevention

July 19, 2016

The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded year three of a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award allows HFA to continue its mission of assisting and advocating for individuals and families in the bleeding disorders community by further […]

HFA Receives 4-Star Rating from Charity Navigator

July 14, 2016

Hemophilia Federation of America (HFA) recently earned a 4-star rating from Charity Navigator, the largest independent charity evaluator in the United States. Charity Navigator鈥檚 ratings system provides donors clear, objective, and reliable assessments of the financial health and accountability, and transparency of charities. Attaining a 4-star rating verifies that HFA exceeds industry standards and outperforms […]

Op-Ed: Serious ACA Wrinkle Jeopardizes Help for Chronic Patients

May 12, 2016

Note: The following is an op-ed written by Charlene Cowell, executive Director of HFA member organization Hemophilia of North Carolina. This article was originally published by the Raleigh News & Observer. To learn more about this issue affecting third party premium assistance, visit our Advocacy page. Despite a significant uptick in the number of insured […]

Helping Hands: Housing Expenses

April 20, 2016

In 2015, HFA’s Helping Hands program assisted聽295 households聽and distributed over聽$124,00 in direct aid to families in the bleeding disorders community!聽Of those 295 households helped in 2015 we assisted 90聽families/individuals聽with their housing expenses. Read how one family has benefited from this vital program: I cannot thank Helping Hands enough for what they did for my family. […]

Remembering Ryan White 26 Years Later

April 7, 2016

Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children.聽Learn more about Ryan’s legacy by clicking […]

HFA Observes February 29 As Rare Disease Day

February 23, 2016

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

HFA Receives Donation of VeinViewer Flex

November 4, 2015

Christie Medical Holdings Inc., a global leader in portable vein imaging systems to aid in venipuncture procedures, has donated a VeinViewer庐 Flex to the Hemophilia Federation of America (HFA) as part of the Christie CARES philanthropy program. Based in Washington, D.C., the Hemophilia Federation of America serves as a consumer advocate for safe, affordable and […]

Helping Hands: Housing Expenses

September 8, 2015

In 2014, HFA’s Helping Hands program assisted聽275 households聽and distributed over聽$124,00 in direct aid to families in the bleeding disorders community!聽Of those 275 households helped in 2014, we assisted 95聽聽families/individuals聽with their housing expenses. Read how one family benefited from this vital program… I cannot thank Helping Hands enough for what they did for my family. Last […]

Helping Hands: Giving Back to the Community

September 8, 2015

  鈥淭hank you so much for all your assistance. I appreciate all your organization does for the hemophilia community. -Helping Hands recipient About HFA鈥檚 Helping Hands Program:聽 Helping Hands聽is a unique financial assistance program that provides individuals and聽families within the bleeding disorders community with basic living expenses. It聽was designed to be a rapid, non-invasive, temporary […]

Recognizing National Nurses Week

May 6, 2015

Nurses play a fundamental and vital role in the lives of patients living with a bleeding disorder. Day after day they help to manage and run our important Hemophilia Treatment Centers (HTCs), answers phone calls in the middle of the night, teach children how to self-infuse at summer camp, and give unconditional support and compassion […]

Radio Interview: HFA on The Carney Show 550 AM, St. Louis

April 1, 2015

On Saturday, March 28, 2015, Rich Pezzillo, HFA’s Communication Director, talked on St. Louis’聽The Carney Show聽550AM, about the ABC Secrets and Lies comment, the importance of Symposium, updates about the work being down around specialty tiers on a local and national level, and how HFA and Gateway Hemophilia Association聽are raising awareness about bleeding disorders.

Novo Nordisk Launches Novoeight庐 for People with Hemophilia A

March 30, 2015

Novo Nordisk announced on March 26, 2015, that they willl launch Novoeight庐 (Antihemophilic Factor [Recombinant]) in the United States for people living with hemophilia A. Novoeight庐 offers purity, reliability, and enhanced portability, with the highest storage temperature for the longest period of time compared with other marketed recombinant Factor VIII products鈥攗p to 86掳F for 12 […]

ABC鈥檚 Secrets and Lies Dishonors Hemophilia Patients

March 17, 2015

ABC鈥檚 Secrets and Lies Dishonors Thousands of Americans Living with Hemophilia Calls manageable hereditary condition 鈥渘asty byproduct of incest.鈥 WASHINGTON, DC 鈥斅燭he Hemophilia Federation of America (HFA)聽was appalled to learn that the American Broadcasting Company (ABC) show聽Secrets and Lies聽referred to hemophilia as a 鈥渘asty byproduct of incest鈥 in the episode 鈥淭he Sister鈥 (S01, E04) that […]

HFA Partnering With NORD For Rare Disease Day and Hemophilia Awareness Month

February 12, 2015

In a couple of weeks, the bleeding disorders community will be recognizing聽Rare Disease Day聽on February 28,聽Hemophilia Awareness Month聽during the entire month of March, and聽World Hemophilia Day聽on April 17. These important dates were created to help raise awareness about rare conditions like hemophilia and other bleeding disorders. This year, we are thrilled to partner with the聽National […]

November is National Caregiver Month

November 2, 2014

The bleeding disorders community is made up of dedicated caregivers. Moms, dads, grandparents, partners, spouses, and friends play a crucial supportive role in their loved one鈥檚 well-being. However, caregivers can often feel stressed, overwhelmed and burnt out. Therefore, it is important for caregivers to remember to take time just for them. Caregivers often feel guilty […]

Community in Action: Beards for Bleeders

September 30, 2014

John Bruno is truly a Dad in Action. HFA recently asked John a few questions about his involvement in the community. John sets a great example for all of those affected by a bleeding disorder. “I’m just looking for a way to do my part in supporting this great community.” Join John in his efforts […]

Helping Hands: Housing Expenses

September 19, 2014

鈥淭hank you so much for all your assistance. I appreciate all your organization does for the hemophilia community. -Helping Hands recipient, 2012 “In late July, a single mom with two young children was referred to Helping Hands to assist in paying her rent after a recent hospitalization of her son with moderate hemophilia A. At […]

Helping Hands: Durable Medical Items

September 12, 2014

[glossary_exclude]   鈥淭hank you for your financial assistance so that we were able to add a chair lift. Prior to installation, I had numerous falls which were injuring to my knees causing decreased stability and mobility. Since the chair lift installation, I have not had a fall and my knees are strengthening and I have […]

A Critical Safety Net from the Past to the Present

September 8, 2014

Helping Hands is a unique financial assistance program that assists individuals and聽families within the bleeding disorders community with basic living聽聽expenses. It聽was designed to be a rapid, non-invasive, temporary resource for emergency situations聽and provide a foundation for future financial stability. In 1997, HFA started the Helping Hands program when it noticed there was an unmet聽need within […]

Handouts for “Tackling Pain & Anxiety: Parents as Coaches for Coping” Webinar

August 12, 2014

Attached are two handouts (pdf) that compliment HFA Families webinar on August 12, 2014. Click on each image to open and download the document.  

2008: Costs Remain Problematic

March 25, 2014

Title:聽Higher Lifetime Insurance Caps Needed for Chronic Conditions By:聽Glenn Mones聽 Source:聽PPTA Karen and George Bishop live in Findlay, Ohio, with their 16-year-old son, Michael, who has hemophilia B (factor IX deficiency). Michael is allergic to factor IX and needs high doses of an expensive bypassing agent to control his bleeding. Even with treatment, Michael has […]

Benefits of Prophylaxis Recognized

March 25, 2014

Prophylaxis versus Episodic Treatment to Prevent Joint Disease in Boys with Severe Hemophilia By聽Marilyn J. Manco-Johnson, M.D. Source:聽New England Journal of Medicine聽 Before the development of cryoprecipitate, a plasma fraction that contains concentrated factor VIII, boys with severe hemophilia A had a diminished life expectancy.聽These children are at risk for many types of hemorrhages, but […]

2006: A Legacy of Tainted Blood

March 24, 2014

Title:聽A Legacy of Tainted Blood By:聽Steve Sternberg Date: July 11, 2006 Source: USA Today Like many young men, Joshua Lunior is searching for his dream girl. He knows she won’t be easy to find, because Lunior, 24, comes with some challenging baggage. He belongs to an all-but-forgotten generation of 10,000 people with hemophilia who contracted […]

2000s: Living with a Bleeding Disorder

March 24, 2014

  In the early 2000’s, the divide in the hemophilia community between the HIV/AIDS-era families, post-heat treated, and recombinant factor using families slowly begins to heal. The community sees a resurgence in families coming together through camps, local, and national meetings. The term 鈥渉emophilia鈥 begins to be replaced by the term聽鈥渂leeding disorders鈥 to acknowledge all […]

1998: Ricky Ray Relief Fund Act Passed

March 23, 2014

聽*Photos courtesy of Corey Dubin Ricky Ray Hemophilia Relief Fund Act of 1998 PUBLIC LAW 105鈥369鈥擭OV. 12, 1998 [H.R. 1023] To provide for compassionate payments with regard to individuals with blood- clotting disorders, such as hemophilia, who contracted human immunodeficiency virus due to contaminated antihemophilic factor, and for other purposes. Be it enacted by the […]

Mid-Late 1990s: A Period of Action for Hemophilia Community

March 22, 2014

_____________________________________ Title: At Annual Meeting, Hoping To Heal Hemophiliacs’ Rift Subtitle: Some Want Retribution For Aids; Others Want To Move On. By: Donna Shaw, INQUIRER STAFF WRITER Date: October 12, 1995 Source: The Philadelphia Inquirer There is much that keeps Michael Carlin alive in the memories of his family. There is his poetry. His music. […]

1990s鈥擜 Time for Action

March 21, 2014

Dateline Federation Fall 1997 聽 聽 聽 Volume 3.1 Hemophilia Federation Launches First Annual Symposium The weekend of September 5 鈥 7, 1997 was filled with entertainment, education, and an epicurean world tour for members of our community who gathered for the Federation鈥檚 first annual educational symposium at the Hyatt Regency Hotel in downtown Houston, […]

1995: A Turning Point for Hemophilia

March 21, 2014

*Articles courtesy of Barry Haarde聽 In 1995,聽a Committee of the Institute of Medicine (IOM),聽releases a report called, HIV and the Blood Supply: An Analysis of Crisis Decision Making, this report is a turning point for the hemophilia community. Click HERE to read the IOM report ________________________________________ Title: Blood Safety Changes Ordered Subtitle: They Include A […]

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