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Community Voices

Dear Addy: 2020 Open Enrollment

October 30, 2019

Dear Addy, I keep seeing reminders about open enrollment beginning November 1, 2019. As a person with a bleeding disorder, what should I look for in an insurance plan? Signed, Investigating Insurance Dear Investigator, The聽Open Enrollment Period聽is a time frame each year when health insurance plans or聽HMOs (health maintenance organizations)聽are required by law to accept […]

Dear Addy: Medicare Open Enrollment 2020

October 23, 2019

Dear Addy, I am a Medicare beneficiary weighing my plan options for 2020. What do I need to know about choosing a plan for the coming year? Medicare Beneficiary Dear Beneficiary, Every year Medicare open enrollment runs from Oct. 15 through Dec. 7. This is the time of year when you can decide to stay […]

Mes de la Herencia Hispana: La Intimidad en Pareja

October 7, 2019

Por: Andy Anderson Para 驴Mujeres con trastornos hemorr谩gicos? 驴Parejas donde los hombres tienen trastornos hemorr谩gicos? 驴Padres sin trastorno hemorr谩gico pero un ni帽o o ni帽a que s铆 tiene un trastorno hemorr谩gico? Es su derecho decidir c贸mo, cu谩ndo, por qu茅 y a qui茅n divulgar detalles sobre su estado de salud; esto incluye amistades, as铆 como relaciones rom谩nticas […]

Infusing Love: Pride and Perseverance

October 3, 2019

  My mother was called a 鈥渂leeder鈥 when I was growing up. I remember she almost died from a hemorrhage after surgery and her nose constantly needed to be packed at the emergency room due to nose bleeds. I never bled like her and never considered I might have something too. I went 36 years […]

Infusing Love: La comunicaci贸n con nuestros hijos e hijas

September 25, 2019

  Tener una buena comunicaci贸n con nuestros hijos e hijas no siempre es f谩cil.聽 Para esto es imprescindible saber estilos adecuados de comunicaci贸n para conocer a nuestros reto帽os m谩s, para saber lo que piensan, para entenderlos m谩s y para saber c贸mo se sienten.聽 De hecho, la comunicaci贸n entre padres e hijos es esencial para fomentar […]

Mes de la Herencia Hispana: Salud Mental en Hombres Latinos con Hemofilia, una Realidad Invisible

September 24, 2019

En pleno siglo 21 luchamos con la pobre educaci贸n y conocimiento que se tiene sobre la Hemofilia u otras enfermedades cr贸nicas padecidas en hombres. A esto le sumamos las creencias sobre roles y masculinidades que invitan a los hombres a no atender su estado de salud emocional. Existe un discurso social predominante a trav茅s de […]

Infusing Love: Remembering Sept. 11, 2001

September 18, 2019

Ver abajo para espa帽ol I鈥檓 pretty sure everyone in Puerto Rico remembers where they were when they heard of the planes crashing on the twin towers in New York. I was at the Conservatory of Music of Puerto Rico, studying for my second bachelor鈥檚 degree in music. I was sitting in the hallway trying to […]

Mes de la Herencia Hispana: La menstruaci贸n es un proceso natural

September 16, 2019

La menstruaci贸n es un proceso natural como cualquier otro. Por: Andy Anderson y Martha Boria “Ahora eres una mujer”. “Aqu铆 est谩n las toallas higi茅nicas”. “Puedes sostener una toalla de agua caliente en el est贸mago por los dolores”. 驴Suena esto familiar? Para muchos de nosotros, hablar de per铆odos era solo algo que pod铆amos hacer con mam谩. […]

Dear Addy: Public Charge Rule

September 16, 2019

Dear Addy, I鈥檝e seen HFA post on social media about changes to the public charge rule. What are the changes and how could they affect the bleeding disorders community? Signed, Concerned Advocate Dear Advocate, Para obtener informaci贸n en espa帽ol, haga clic aqu铆. Thanks for reaching out about this important and developing issue. As you may […]

Dear Addy: Off to College

August 19, 2019

Dear Addy, My family is active with our local bleeding disorders community, but now I am going to college in a different state. How do I find an organization near my school so I can remain involved as a community advocate in a new state and at the national level? Signed, Active Young Advocate Dear […]

HFA Awarded PCORI Grant to Engage Women in Research

July 25, 2019

Hemophilia Federation of America has received a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute for its FIRST (Females in Research Sharing and Translation) Project to improve opportunities for women to be engaged in patient-centered research. The capacity-building grant will support HFA鈥檚 FIRST Project which will begin by identifying how women are […]

Dear Addy: Back to School 2019

July 12, 2019

Dear Addy, My son has hemophilia and I鈥檓 nervous about his safety as he starts school this year. How can I advocate for him at school and make sure his bleeding disorder is understood? Signed, Nervous Nancy Dear Nervous, You are not alone 鈥 many families struggle with this experience! Taking a proactive approach to […]

Dear Addy: Virtual Hill Day

July 2, 2019

Dear Addy, I recently saw HFA post on Facebook about an advocacy day on Capitol Hill. I wasn鈥檛 able to participate on the day of the event; can I still get involved? Signed, Advocacy Amplified Dear Advocacy, Yes! The posts you saw were in conjunction with HFA鈥檚 annual Patient Fly-in and Virtual Hill Day on […]

Dear Addy: History Exhibit

May 20, 2019

Dear Addy, I attended HFA鈥檚 Symposium in San Diego and really enjoyed the history exhibit. Is there a way for me to access the timeline? I鈥檇 like to read more about the history of the bleeding disorders community. Signed, Advocate for the Ages 聽Dear Advocate, Yes! You can access the latest version of HFA鈥檚 historical […]

Dear Addy: 5 Minutes for Project CALLS

April 15, 2019

Dear Addy- I am having a horrific time with my insurance company getting a prior authorization approved. I know I should call Project CALLS, but I simply don鈥檛 have time to be on the phone with the insurance company and Project CALLS. Why is it so important that I let HFA know what鈥檚 going on […]

Infusing Love: Decisions and Apprehensions

March 20, 2019

  I came back from HFA鈥檚 2018 Symposium pumped. 鈥淭ogether We Rock鈥 was an experience that left me much better equipped to face the many challenges of having a child with a bleeding disorder. Most of all I met other moms that go through similar situations with their own children; some were even from Puerto […]

Dear Addy: Raising Awareness

March 18, 2019

Dear Addy, I鈥檝e been sharing HFA鈥檚 Facts a Day about Bleeding Disorders Awareness Month, but I want to do more. How can I help raise awareness about bleeding disorders? Signed, Ready to Activate Dear Ready to Activate, It鈥檚 wonderful to hear that you are motivated to help spread the word about bleeding disorders! As a […]

Dear Addy: Manufacturer Copay Assistance & Accumulator Adjuster Programs

February 18, 2019

Dear Addy, I use a manufacturer copay assistance program to help me meet the out-of-pocket costs associated with my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You have run up […]

Infusing Love:聽 A Brotherly Bond

February 13, 2019

鈥淲atch out for my brother. He鈥檚 a bleeder,鈥 Logan will often say when we are at an interactive birthday party. Logan is Maddox鈥檚 5-year-old brother. He is extremely protective of him. Whenever we are at an event Logan will do his best to 鈥減rotect鈥 his little brother from anyone pushing him too hard or potentially […]

Dear Addy: Surprise Billing

January 21, 2019

  Dear Addy I鈥檝e heard the term 鈥渟urprise billing鈥 in the news recently and I鈥檓 concerned about how it could affect my family, especially if we have to go to the emergency room for a bleed and a provider is out-of-network. Can you share more on this issue and what we can do if it […]

Infusing Love: Thanks, But Not Now

January 2, 2019

HFA does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific products, treatments, or opinions. Please consult your physician before use of any treatments. We recently had Jackson鈥檚 six-month comprehensive visit at the hematologist. A comprehensive visit is an appointment in which many bleeding disorders specialists meet with […]

Infusing Love: How Do You Measure

December 27, 2018

鈥525,600 minutes鈥525,000 moments so dear.鈥澛 Just like the song from the musical 鈥淩ent,鈥 those 525,600 minutes go so quickly, and you feel as though in a blink of an eye the year is gone. As we see the finish line of another year, I can鈥檛 help but look back at 2018 with mixed emotions. For […]

Dear Addy: Advocacy Leadership Council

December 24, 2018

Dear Addy, I鈥檓 the parent of a hemophiliac and I鈥檇 like to become more involved in advocacy work to support my child and the bleeding disorders community at-large. Does HFA have any advocacy programming available for parents? Signed, Active Advocate 聽 Dear Advocate, Yes! HFA recently announced the creation of a new Advocacy Leadership Council. […]

Dear Addy: Learning Central

December 10, 2018

Dear Addy, I鈥檝e heard about HFA鈥檚 new Learning Central, but I鈥檓 not sure how to find it and the benefits of using it. Can you provide more information? Signed, Lifelong Learner Dear Learner, HFA鈥檚 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鈥檚 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.聽 Though I was nervous, I had spent a lot of time […]

Dear Addy: New Legislator

November 26, 2018

Dear Addy, My district elected a new member of Congress in the mid-term election and I鈥檇 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鈥檚 never too early to start building a relationship with your new legislator. […]

Dear Addy: Framing Your Story

November 13, 2018

Dear Addy, I鈥檇 like to be more involved in my local organization鈥檚 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聽Open Enrollment Period is a time frame each year when health insurance plans or聽HMOs (health maintenance organizations)聽are […]

Infusing Love: There鈥檚 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.聽 When we were selected, I was beyond excited.聽 Running a marathon was on my bucket list.聽 I know, really clich茅, but true.聽 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, […]


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