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Community Voices

Dear Addy: Learning Central

December 10, 2018

Dear Addy, I’ve heard about HFA’s new Learning Central, but I’m not sure how to find it and the benefits of using it. Can you provide more information? Signed, Lifelong Learner Dear Learner, HFA’s Learning Central is part of the HFA Institute, a new e-learning initiative designed for the bleeding disorders community. The HFA Institute […]

Infusing Love: It Could Have Been Worse

November 29, 2018

  On Liam’s first day of kindergarten in late August, we brought him to school with a mix of pride, fear, excitement, and tears. Okay, I was the only one who shed the tears, but we were all ready for this big day to arrive.  Though I was nervous, I had spent a lot of […]

Dear Addy: New Legislator

November 26, 2018

Dear Addy, My district elected a new member of Congress in the mid-term election and I’d like to start building a relationship with them. How can I connect with my legislator as they prepare to take office? Signed, Proactive Advocate Dear Proactive, It’s never too early to start building a relationship with your new legislator. […]

Dear Addy: Framing Your Story

November 13, 2018

Dear Addy, I’d like to be more involved in my local organization’s advocacy work in the new year, but I have a hard time coming up with the right words to get my point across. Does HFA have any resources for storytelling for advocacy? Signed, In Need of Instruction Dear Instruction, You came to the […]

Dear Addy: 2019 Open Enrollment Period

October 29, 2018

Dear Addy, I know that the Open Enrollment Period for health insurance is right around the corner. As a person with a bleeding disorder, what should I look for in an insurance plan? Signed, Savvy Subscriber Dear Subscriber, The Open Enrollment Period is a time frame each year when health insurance plans or HMOs (health maintenance organizations) are […]

Infusing Love: There’s No Quitting

October 26, 2018

About a year or so ago, I thought it would be a great idea for HFA to apply to be a Charity Partner for the Marine Corp Marathon in Washington, D.C.  When we were selected, I was beyond excited.  Running a marathon was on my bucket list.  I know, really cliché, but true.  It was […]

Mental Health Awareness Campaign: How to Get Started

October 18, 2018

  You have decided to take the first step toward mental health care, but how do you get started? Luckily you have options and many people around who are eager to help. Most times, the initial step of reaching out are with the individuals and groups that you most trust, such as family, friends, physician, […]

Dear Addy: Medicare Open Enrollment

October 15, 2018

Dear Addy, I recently enrolled in Medicare and I got a notice that open enrollment for 2019 is coming up. What do I need to know about choosing my plan for the coming year? Signed, Medicare Madness Dear Medicare Madness, You are right: Medicare open enrollment for 2019 is fast approaching! The open enrollment period […]

LA FDA APRUEBA HEMLIBRA DE GENENTECH

October 4, 2018

El siguiente es un comunicado de prensa proporcionado por Genentech.  LA FDA APRUEBA HEMLIBRA® DE GENENTECH (EMICIZUMAB-KXWH) PARA LA HEMOFILIA A SIN INHIBIDORES DE FACTOR VIII – El primer medicamento que reduce considerablemente la hemorragia tratada en comparación con la previa profilaxis de factor VIII basada en una comparación intrapaciente – – Único medicamento que puede […]

Dear Addy: Engaging in Research

October 1, 2018

Dear Addy, I watched a few of HFA’s PRIDE Project webinars. Can you explain to me how engaging in research will make me a better advocate? Signed, Curious about Research Dear Curious, It’s great to hear that you watched some of the PRIDE Project webinars, as those webinars provide an introduction to and basic training […]

Infusing Love: A Busy First Week of School

September 26, 2018

My boys went back to school this past week, and while I’m not exactly a pro, I have done this before. My youngest, Myles started first grade while my oldest, Zachary, began fifth grade. The first week of school is exhausting, overwhelming, and frustrating. It won’t be a picnic for a child with a bleeding disorder and a […]

Dear Addy: Voter Information

September 17, 2018

Dear Addy, With the midterm election fast approaching, does HFA have any tools to assist voters? I’d like to see who the candidates are in my district and state and where they stand on access to healthcare for the bleeding disorders community. Signed, Informed Voter Dear Voter, This is a great and timely question with […]

Infusing Love: Daycare to Preschool

September 12, 2018

We’ve been lucky enough to have Maddox home with us since he was diagnosed at 6 months old. My husband works nights, so he watches him during the day. We pulled him from daycare at 6 months because we were worried about other kids throwing things at him, and potentially him making the wrong move […]

Dear Addy: Inviting Legislators to Your Event

September 3, 2018

Dear Addy, My local organization is hosting a few events this fall and I’d like to invite our U.S. Representative to attend. How do I send them an invitation? Signed, Active Constituent Dear Constituent, This is a timely question, as mid-term elections are a few months away and members of the House of Representatives and […]

Dear Addy: Project CALLS Infographic

August 20, 2018

Dear Addy, I recently attended an event and learned about submitting issues with my insurance to HFA’s Project CALLS. However, I still have some questions about how CALLS works and what happens when I submit an issue. Can you explain the process? Signed, CALLS Quandary Dear Quandary, HFA created an infographic to answer this very […]

Infusing Love: Wings To Fly

August 15, 2018

Next week, my 15-year-old son with severe hemophilia A will go back to school. Normally at this point in the summer, I’ve done my due diligence by asking for his teachers’ names, ensured his schedule doesn’t have him running all over campus, and asking for a meeting with the powers that be to teach them […]

Dear Addy: Mental Health

August 6, 2018

Dear Addy, I’ve heard friends in the bleeding disorders community speak about depression and other mental health concerns. I want to support them, but I’m not sure how to approach this sensitive topic. Can you offer guidance on how to have a conversation with friends about mental health? Signed, Caring Friend Dear Friend, Thank you […]

HFA seeks historical materials to honor bleeding disorders in its 25th year

July 26, 2018

Hemophilia Federation of America will recognize 25 years serving the bleeding disorders community in 2019 with plans to display historical records at its annual symposium in San Diego. The Washington, D.C.-based organization is currently collecting archival-type material, such as vintage medical equipment, supplies, rally posters, journals, diaries, newsletters, documents, photographs and other items representing the […]

Dear Addy: Supporting Siblings

July 23, 2018

Dear Addy, I have a bleeding disorder and two siblings who are unaffected. My siblings often ask how they can help or what they can do to support me. How do I share with them what I’m feeling and how to best support me? I don’t want to burden them with my issues. Signed, Supportive […]

Infusing Love: A Phone Call Away

July 18, 2018

I recently had the opportunity of volunteering to be one of the nurses in the infusion center at the annual HFA symposium. I had the privilege of working with two amazing nurses that work in the hemophilia community. I quickly realized that they both had so much knowledge in the hemophilia world!  l learned so […]

Dear Addy: August Recess

July 9, 2018

Dear Addy, I’d like to meet with my legislators at home during Congress’s August recess. How do I schedule a meeting? Signed, Recess Rockstar Dear Recess, August recess is a great time to meet with your federal legislators at home. Members of the House of Representatives will be on recess from July 27 through Sept. […]

Intern Introspective: The First Five Weeks

July 5, 2018

The halfway point of our Policy and Government Relations Internship program is an excellent time for Alexandra and Catherine to reflect on the first five weeks of their internship. In this blog post, Alexandra and Catherine break down what an average week looks like for them as HFA interns and they talk about what the […]

Dear Addy: Accumulator Adjuster Programs

June 25, 2018

Dear Addy, I’ve seen HFA post information on accumulator adjuster programs, but I’m still a little unclear about what this means and how I could be affected. Does HFA have any other resources on accumulator adjuster programs? Signed, Deductible Detective Dear Detective, This is a great question, as accumulator adjuster programs (AAPs) are increasingly common in the […]

Intern Introspective: Experience on Capitol Hill

June 22, 2018

We’ve introduced you to Alexandra and Catherine, our summer Policy interns. They have been busy in D.C., attending Congressional hearings and learning the ropes of working for a national organization. During their second week, they experienced first-hand the planning and execution of our fifth annual Patient Fly-In. Read their experiences through their eyes on how […]

Infusing Love: Hemo Dads

June 20, 2018

This post is written as a special shout-out to my husband; a hemo dad, and all the other caregivers who have patience just like my husband Shane. I’m pretty lucky to have a husband who is very involved in Maddox’s infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]

Dear Addy: Virtual Hill Day

June 11, 2018

Dear Addy, I saw a post on HFA’s Facebook page about a Virtual Hill Day on June 12. Can you tell me more about this and how people outside of D.C. can be involved? Signed, Virtual Visitor Dear Visitor, Every year, HFA hosts a fly-in for members of the bleeding disorders community to come to […]

Intern Introspective: Meet Alexandra and Catherine

June 8, 2018

Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Alexandra Abreu Boria and Catherine Anderson, who are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in […]

Infusing Love: Aumentando mi conexión con la familia de trastornos hemorrágicos

May 29, 2018

Soy Sylvia Verardi y vivo en la isla de Puerto Rico. Mucha gente no sabe esto, pero Puerto Rico es un territorio estadounidense en el Caribe; está bastante cerca de las Islas Vírgenes de los Estados Unidos. Somos un Estado Libre Asociado y el año pasado pasamos por dos huracanes, Irma y María, que nos […]

Dear Addy: Planning for Summer Activities

May 28, 2018

Dear Addy, This summer, my family has plans to travel and attend camp, in addition to numerous other activities and commitments. Can you recommend resources to help manage my kids’ bleeding disorder while we’re on the go? Sincerely, Summer Savvy Dear Summer, With Memorial Day marking the unofficial start of summer, this is a timely […]

Dear Addy: New Treatment Research

May 15, 2018

Dear Addy, How do I approach my doctor with questions on new research about a treatment for my bleeding disorder? There are so many novel treatments under development or newly available! I want to make sure that my doctor considers my input and will work with me to select the treatment that best serves my […]


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