Donate

Tips to Stay Healthy this Cold and Flu Season

October 9, 2015

For most of us, fall and winter means less time outdoors in the fresh air, and more time spent in close quarters with those that we work, play, learn, and live with. It is a great opportunity for cold and flu viruses to work their way from one person to the next. While we all […]

Infusing Love: A Painful Legacy

October 1, 2015

  I attended my first, big, national hemophilia conference in 1997. My son, Julian, was 2 years old and I was scared to death. The enormity of it was almost too much!聽 The exhibit hall with giveaway after giveaway (I had no idea that my son was seen as a dollar sign to some), huge […]

Get Behind “Gears for Good”

September 24, 2015

It鈥檚 not too late to make a difference! The Gears for Good bike ride is this Saturday, September 26th, 2015. FitFactor encourages physical activity in individuals with bleeding disorders.聽 HFA provides an opportunity for those who are physically active to benefit the bleeding disorders community in our annual charity bike ride-Gears for Good.聽 You don鈥檛 […]

Infusing Love: It鈥檚 Like Riding A Bike

September 23, 2015

I鈥檇 like to make something very clear: I鈥檓 not one of those people who wake up in the morning dying to go for a bike ride! It鈥檚 more of a sigh, I guess I should go ride my bike鈥 I first heard about Gears for Good from my friend, Diane. She told me about a […]

Dear Addy: Applying for Jobs

September 21, 2015

Dear Addy, I鈥檓 applying for jobs and am nervous that the marks on my arm from infusing will present awkward questions. What should I do? Signed, Marked Dear Marked, This is a valid fear. For people unfamiliar with the need to infuse medication verses swallow it, the marks on your arms left by multiple infusions […]

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 […]

FDA Grants Breakthrough Therapy for Subcutaneous Inhibitor Treatment

September 4, 2015

Note: This is an edited form of a press release from Genentech. To read the original release in its entirety,聽click here. Genentech announced on Friday, September 4, 2015, that the U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation to ACE910 (RG6013, RO5534262) for the prophylactic treatment of people who are 12 years […]

Dear Addy: Back to School 2015

September 4, 2015

Dear Addy, My daughter is about to start kindergarten. How should I go about telling the teachers and administrators at her school about her hemophilia?聽 I want them to know how best to respond to any incidents without treating her like a Faberge egg. Signed, Off to School鈥擭ow What?! Dear Off to School, Sending a […]

2015 Summer Intern Recap

August 7, 2015

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Adam and Matthew are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Adam and Matthew: Gained […]

Infusing Love: Camp Forget-Me-Nots

July 29, 2015

鈥淚 don鈥檛 have a bleeding disorder,鈥 said my oldest daughter, MaRee, last summer after I told her that I was signing her up for a joint teen retreat/camp hosted by Hemophilia of South Carolina and Hemophilia of North Carolina (HSC/HNC). 鈥淚 know you don鈥檛 have a bleeding disorder, but they are allowing siblings to attend.聽 […]

Dear Addy: CHOICE

July 29, 2015

Dear Addy, I keep seeing all of these Facebook posts and Tweets about the CHOICE Project. What is it and why does it matter if I take part? Signed, Need-to-Know Dear Need-to-Know, Glad you asked. CHOICE (Community Having Opportunity to Influence Care Equity) is a project driven by HFA and supported by the Centers for […]

HFA Interns Tour Maryland Plasma Center

July 24, 2015

Earlier this summer,聽we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Last week, Matthew and Adam had the opportunity to tour Grifol’s plasma collection center in Frederick, MD. Centers like this collected plasma from donors, returning the […]

Baxalta Releases Findings of Potential Extended Half-Life Product

July 21, 2015

Note: This is an edited form of a press release from Baxalta, Inc., originally published on July 16, 2015. To read the full press release, click here. Baxalta Incorporated announced the publication of the complete data from the Phase II/III pivotal study and Phase I trial of BAX 855 in Blood, the journal of the […]

Infusing Love: Towards the Light or the Shadow?

July 8, 2015

When you are in the middle of what seems like a never-ending bleed, you function in the moment, hoping that things get better soon. Living with a chronic condition has helped my family learn to look at things in a positive light, and I like to think it has helped me become someone who sees […]

HFA Patient Fly-In: Through Our Interns’ Eyes

July 7, 2015

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 2nd Annual Patient Fly-In.聽Below is their take on the week, and a bonus […]

Supreme Court Upholds ACA Subsidies

June 25, 2015

We鈥檙e pleased today to learn that the Supreme Court of the United States, in a 6-3 decision, upheld the subsidies provided under the Patient Protection and Affordable Care Act (ACA). These tax subsidies have allowed so many in our community to afford the care they need to treat their聽鈥猙leeding disorders,聽and we are confident that these […]

Infusing Love: Thankful for Hemophilia

June 24, 2015

As a parent of a child with hemophilia, it is quite often difficult to find something about hemophilia for which you are thankful. Let鈥檚 be honest, for all of us, at times, it can be difficult to sing the praises of hemophilia. Thankfully, there are also days that you realize the multitude of unexpected blessings. […]

Cycling 4,000 Miles for Hemophilia Awareness

June 19, 2015

Note: This story originally appeared on PRWeb.聽Barry Haarde is a participant in HFA’s annual Gears for Good ride from West Virginia to Washington, DC. Cyclist Barry Haarde is on a mission to raise awareness about hemophilia and encourage individuals to support needy hemophilic children through Save One Life, which supports more than 1,200 individuals with […]

HFA Champion Award Given to 4 Members of Congress

June 18, 2015

On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day聽to gain support for bill聽HR 1600, The Patients鈥 Access to Treatment Act聽in the US House and Senate, and other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

Infusing Love: Friends to the Rescue

June 18, 2015

We had a tough winter. We spent more time than ever before cuddled up in an ER room watching whatever Disney movie was on the in-hospital. Doctors and nurses would rush in and out. We ate fast food and hospital food.. We coped. Because, this is our life. This is our reality. We have a […]

Dear Addy: Out-Of-Pocket Costs

June 15, 2015

Dear Addy, So I saw the question you recently answered about what counts towards a deductible.聽You didn鈥檛 talk about what counts towards out-of-pocket costs. Does every penny I spend on healthcare count towards my out-of-pocket costs limit? Signed, 聽Pocket Picky 聽Dear Picky, No, not every penny you spend on healthcare will count towards your annual […]

Keep Kids Active this Summer

June 5, 2015

School is out, so now what?聽 Summer is a great time to keep kids busy with physical activity because the weather allows for many聽outdoor activities.聽 The CDC recommends that kids get at least 60 minutes of physical activity every day.聽 Children with bleeding disorders need to exercise too.聽聽Physical activity helps聽to strengthen their muscles and keep […]

2015 Advocacy and Government Affairs Interns

June 4, 2015

Earlier this year, we opened applications for a ten week advocacy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Adam and Matthew are part of the bleeding disorders community and have been chosen聽because of their leadership qualities and interest in the field of […]

Dear Addy: Fundraising

June 1, 2015

Dear Addy, I really want to be able to help raise awareness of, and funds for the bleeding disorders community. I don’t know what I could do to get people to donate. Please help me! Signed, HemoProud Dear Proud, The best way to raise bleeding disorders awareness, and in turn raise funds to support HFA […]

FitFactor: Summer Berry Recipes

May 29, 2015

A healthy diet is one that includes lots of whole foods, few processed or refined foods and very聽little sugar.聽 It is important for people with bleeding disorders to eat a healthy diet to help maintain a proper weight and to reap all of the vitamins, minerals, fiber and nutrients that a diet rich in fruits […]

Infusing Love: Finding Our Way

May 27, 2015

Families come in all shapes and sizes and it鈥檚 no surprise that those will special needs face a unique set of challenges. Raising my twin daughters while balancing the demands of various medical, neurological, and learning differences thrust me in to a endless game of special needs roulette. Predicting the outcome is impossible.聽 Each of […]

Infusing Love: Physical Fundraising

May 20, 2015

This is becoming one of my favorite times of the year to be a bleeding disorders advocate. It鈥檚 the time of year when individuals of all ages come together to raise crucial money for the community by participating in walks and bike rides across the country. In 2011, HFA hosted its first annual Gears for […]

FDA Making Progress With Blood Safety Monitoring System

May 15, 2015

Last December,聽Food and Drug Administration (FDA)聽Commissioner Margaret A. Hamburg 聽set forth a recommendation to聽change the current blood donation policy for men who have sex with men (MSM). The old policy, set forth in the height of the AIDS crisis of the 1980s, barred men who have had sex with men since 1977 from donating blood. […]

Infusing Love: A Balancing Act

May 13, 2015

When I am toting around my two preschool aged boys to kids activities or the store, I typically get the comment, 鈥淵ou have your hands full.鈥澛 I reply with a smile in agreement, but in my mind I respond, 鈥淚f you only knew.鈥澛 Recently when someone opened heavy doors for me as I struggled with […]


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