Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Next week, my 15-year-old son with severe hemophilia A will go back to school. Normally at this point in the summer, I鈥檝e done my due diligence by asking for his teachers鈥 names, ensured his schedule doesn鈥檛 have him running all over campus, and asking for a meeting with the powers that be to teach them […]
Dear Addy, I鈥檝e heard friends in the bleeding disorders community speak about depression and other mental health concerns. I want to support them, but I鈥檓 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 […]
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, 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鈥檓 feeling and how to best support me? I don鈥檛 want to burden them with my issues. Signed, Supportive […]
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!聽 l learned so […]
Dear Addy, I鈥檇 like to meet with my legislators at home during Congress鈥檚 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. […]
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, I鈥檝e seen HFA post information on accumulator adjuster聽programs, but I鈥檓 still a little unclear about what this means and how I could be affected. Does HFA have any other resources on accumulator adjuster聽programs? Signed, Deductible Detective Dear Detective, This is a great question, as accumulator adjuster programs (AAPs) are increasingly common in the […]
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 […]
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鈥檓 pretty lucky to have a husband who is very involved in Maddox鈥檚 infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]
Dear Addy, I saw a post on HFA鈥檚 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 […]
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聽are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in […]
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; est谩 bastante cerca de las Islas V铆rgenes de los Estados Unidos. Somos un Estado Libre Asociado y el a帽o pasado pasamos por dos huracanes, Irma y Mar铆a, que nos […]
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鈥 bleeding disorder while we鈥檙e on the go? Sincerely, Summer Savvy Dear Summer, With Memorial Day marking the unofficial start of summer, this is a timely […]
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 […]
Dear Addy, I recently participated in a state legislative day and there was a lot of discussion about committees. It鈥檚 been years since I took a civics class and I don鈥檛 remember much about committees. Could you explain what they are and why they鈥檙e important to our advocacy efforts? Signed, Curious About Committees Dear Curious, […]
Every year at Symposium, there is some special moment that defines that year鈥檚 event for me. As we kick off our 2018 event tomorrow, I鈥檓 reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.) 聽 This picture encapsulates our […]
Dear Addy, I鈥檓 attending HFA鈥檚 Symposium next week and I鈥檇 like to gather information about personal and legislative advocacy to bring back to my community. What sessions do you recommend I attend? Signed, Planning Ahead Dear Planner, It鈥檚 great to hear you will be attending Symposium in Cleveland! This year, we have expanded our advocacy […]
Some of us love exercise.聽 Some of us (me!) hate it but love it when you鈥檙e done.聽 What do you find to be the hardest part of exercising?聽A lot of times it鈥檚 finding the time.聽As moms we鈥檙e pulled in a thousand different directions all throughout the day.聽 Between jobs, kids, and spouses, there is never […]
Dear Addy, How can I maintain relationships with my legislators after participating in an advocacy day? Signed, Building for the Future Dear Builder, It鈥檚 great to hear you are thinking ahead to what鈥檚 next! Building relationships with your legislators is an important advocacy strategy and there鈥檚 a lot you can do from home and throughout […]
When Scarlett was diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn’t be able to play most sports. As she went from toddlerhood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious […]
Dear Addy, I鈥檝e heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I鈥檇 like to submit a piece during Bleeding Disorders Awareness Month. Can you offer tips for submitting my story? Signed, Ready-to-Write Dear Writer, Writing an op-ed or opinion piece is a great way to […]
My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we […]
Dear Addy, I鈥檝e seen HFA鈥檚 Facebook posts about Bleeding Disorders Awareness Month. Can you tell me more about it and how I can get involved? Signed, Attentive Advocate Dear Attentive, For more than 30 years, the bleeding disorders community celebrated March as the unofficial Hemophilia Awareness Month. In 2016, this designation become official when the […]
Disclaimer: At HFA, we value all opinions. This blog only reflects the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 a.m. on April 20, 1999, in Littleton, Colorado, […]
Dear Addy, My eleven-year-old son recently shared that he鈥檚 being bullied at school because of bruising caused by his bleeding disorder. How can I help him educate his classmates about hemophilia and prevent future bullying? As much as I want to protect my son, I also know that I need to empower him to […]
Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]
Dear Addy, I鈥檓 participating in an Advocacy Day with my local bleeding disorders organization this month. I have limited experience with legislative advocacy and it鈥檚 been a long time since I took a civics class! Could you share insight on what to expect and how to prepare? Signed, Proactive Participant Dear Participant, This is a […]
When I committed to writing this week鈥檚 blog, I had no idea what I would blog about until I went to see the movie 鈥榃onder.鈥 Wonder is about a boy named Auggie who was born with a facial disease called聽mandibulofacial dystosis, also known as 鈥淭reacher Collins syndrome.鈥 Due to Auggie鈥檚 medical needs, which require the […]
Dear Addy, I’m already experiencing problems with my insurance in the new year. Where can I go to report these issues? Signed, New Year, Old Issues Dear New Year, You are not alone. HFA regularly hears from community members with concerns about access to care due to limitations or mandates set by their insurance company. […]
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