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Community Voices

Intern Introspective: Tameelah’s Podcast

September 18, 2020

  As a part of the HFA Policy and Government Education internship, the interns are tasked with creating a final capstone project encompassing what they have learned, culminating in the creation of advocacy and policy programming that is aimed at a young adult audience. The capstone is fully intern-driven, from concept to execution, with support […]

Intern Introspective: Will’s Reflections

September 7, 2020

  By Will Hubbert As sad as it is to write, my time as an intern at HFA has come to an end. I鈥檝e loved my time here, so I want to use this last reflection as an opportunity to thank my mentors and recommend the program. HFA鈥檚 internship is a truly amazing experience, and […]

Dear Addy: Frantic Freshman

August 18, 2020

    Dear Addy, This will be my first year going off to college and I鈥檓 a little bit nervous about it. The prospect of traveling hundreds of miles away from home and my HTC was already daunting, and COVID has only made this big transition feel even bigger. What can I do to make […]

Intern Introspective: An Average Week

July 30, 2020

It鈥檚 hard to believe, but our summer interns are more than halfway through their time with us this summer. In this blog post Will and Tameelah give you an inside look into an average week in the life of an intern, and in Will鈥檚 words, 鈥渉opefully inspire some intrepid young person to apply for this […]

Dear Addy: Family Planner

July 21, 2020

Dear Addy, My high school sweetheart and I are in our senior year of college and recently began a conversation about life after school. Are there any resources for us to learn more about starting a family when you know you are a carrier or have a history of bleeding disorders in your family?聽 Signed, […]

Intern Introspective: Making Our Mark

July 6, 2020

Earlier this summer, we introduced you to Will and Tameelah, our summer Policy and Government Education interns. Both young adults have been active in their local bleeding disorders community and are passionate about keeping their peers involved. This week we asked Tameelah and Will to share how they want to make their mark in our […]

Intern Introspective: Meet Our 2020 Policy & Government Relations Interns

June 19, 2020

My name is Tameelah Dawson. I am 21 years old from Lexington, S.C., and currently a senior at Claflin University in Orangeburg, S.C., pursing a bachelor鈥檚 degree in psychology. I have been heavily active in the hemophilia community for well more than five years. I鈥檝e served as a junior board member for Hemophilia South Carolina […]

Dear Addy: Avid Advocate

June 16, 2020

Dear Addy, Each year, I travel to Washington, D.C., and my state capitol to meet with my legislators and members of Congress to discuss issues that are most important to the bleeding disorders community. Due to COVID-19, I have heard that in-person visits are no longer viable options. How can I make sure my voice […]

Dear Addy: Cautious to Proceed

May 20, 2020

Dear Addy- I recently learned I am eligible to receive an Economic Impact Payment or 鈥渟timulus check鈥. While I have not received any funds yet, I have received several voicemails stating that I am required by law to provide personal banking information, my social security number and pay a fee before I can receive any […]

Mental Health Awareness Campaign: Celebramos el mes de la Concientizaci贸n Salud Mental.

May 15, 2020

隆Salud Mental es para todos! Mayo es el mes de la concientizaci贸n de la salud mental. Este mes sirve para concientizar e informar a el mundo entero de los desaf铆os de salud mental. Tambi茅n, de los esfuerzos que se est谩n haciendo. Reconocemos, que estamos enfrentando un tiempo de aislamiento y encierro y que es muy […]

Coronavirus (COVID-19) 鈥 What HFA is Doing

April 30, 2020

Click Below to Translate Page to Spanish. STATEMENTS AND UPDATES During this time of rapidly-changing news surrounding the COVID-19 outbreak, HFA聽will continue to publish updates and information about COVID-19 and its effects on the bleeding disorders community. MEDICAL NEWS INDUSTRY NEWS & PRODUCT AVAILABILITY NATIONAL, GOVERNMENT AND LOCAL NEWS RESOURCES FAQ: BLEEDING DISORDERS AND COVID-19 […]

Dear Addy: Seeking Assistance

April 20, 2020

Dear Addy- Like many others, I have been laid off of work due to COVID-19. I鈥檓 supposed to receive pandemic unemployment assistance through the CARES Act, but it鈥檚 not in my bank account yet and I have bills to pay. Can HFA鈥檚 Helping Hands program help? Signed, Need a Little Help From My Friends Dear […]

Dear Addy: Panicked and Confused

March 23, 2020

Dear Addy,聽 Due to the recent COVID-19 crisis, my employer has made drastic cuts to my work schedule and I am facing potential unemployment. As a person living with a bleeding disorder, I鈥檓 not sure how this will impact me. I鈥檝e been getting benefits through my employer for a while now, but without a job, […]

El Simposio Anual de HFA ha Sido Pospuesto

March 13, 2020

A medida que la naci贸n contin煤a respondiendo al brote de COVID-19, hemos tomado la dif铆cil decisi贸n de posponer el Simposio. Esperamos anunciar una nueva fecha para fines de la pr贸xima semana. Si bien esper谩bamos que el COVID-19 no afectara este evento familiar querido, nuestra preocupaci贸n por la seguridad de nuestros asistentes, oradores y voluntarios, junto […]

Dear Addy: Excused School Absence

February 18, 2020

Dear Addy, My child wants to attend our state’s Advocacy Day, but she has a limited number of excused absences. I want her to learn how to advocate for herself and the bleeding disorders community, as well as to see democracy in action. Can you offer guidance for working with her school to allow the […]

Dear Addy: Reporting Insurance Issues

January 21, 2020

Dear Addy, I鈥檓 already experiencing issues with my health insurance, despite being less than a month into the new year. What resources does HFA have for reporting these issues? Signed, Frustrated Consumer Dear Frustrated, HFA understands your frustration and wants to hear from you. We strongly encourage you to reach out to HFA with stories […]

Dear Addy: Informed Voter

December 16, 2019

Dear Addy, With the 2020 elections less than a year away, I鈥檇 like to become more informed about the candidates鈥 positions on health reform issues. Can you recommend resources to find and compare information? Signed, Informed Voter Dear Voter, Health reform will continue to be a critical issue for 2020 candidates, as it was during […]

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 […]


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