Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
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, 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, 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’s been years since I took a civics class and I don’t remember much about committees. Could you explain what they are and why they’re important to our advocacy efforts? Signed, Curious About Committees Dear Curious, […]
Every year at Symposium, there is some special moment that defines that year’s event for me. As we kick off our 2018 event tomorrow, I’m 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.) This picture encapsulates our […]
Dear Addy, I’m attending HFA’s Symposium next week and I’d 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’s great to hear you will be attending Symposium in Cleveland! This year, we have expanded our advocacy […]
Some of us love exercise. Some of us (me!) hate it but love it when you’re done. What do you find to be the hardest part of exercising? A lot of times it’s finding the time. As moms we’re pulled in a thousand different directions all throughout the day. 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’s great to hear you are thinking ahead to what’s next! Building relationships with your legislators is an important advocacy strategy and there’s 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’ve heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I’d 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’ve seen HFA’s 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 only 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 AM, on April 20, 1999, in Littleton, […]
Dear Addy, My eleven-year-old son recently shared that he’s 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’m participating in an Advocacy Day with my local bleeding disorders organization this month. I have limited experience with legislative advocacy and it’s 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’s blog, I had no idea what I would blog about until I went to see the movie ‘Wonder.’ Wonder is about a boy named Auggie who was born with a facial disease called mandibulofacial dystosis, also known as “Treacher Collins syndrome.” Due to Auggie’s 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. […]
Puerto Rico, Isla del encanto, conocida por sus bellas playas, gente amigable y amable, en donde se baila la mejor salsa y se degustan los mejores sabores caribeños. Arropada por el Mar Caribe y el Océano Atlántico. En donde se habla español y es un territorio ligado a Estados Unidos como Estado Libre Asociado y […]
Dear Addy, I get assistance with my out-of-pocket costs from the manufacturer of 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 are running up against a new strategy that […]
I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn’t anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]
“So, he’s still wearing the helmet?” The question, posed by HTC staff at our recent annual visit gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic I’ve seen the comment threads on […]
Dear Addy, I want to participate in a legislative day, but I’m a terrible public speaker. Help! Signed, Nervous Nelly Dear Nervous, You are not alone – many people worry about public speaking! Use these tips to help you become more confident and comfortable speaking during legislative meetings. Hopefully you’ll find this advice beneficial – […]
It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy’s Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound […]
It’s been two months since wildfires ripped through Northern California leaving a path of destruction in Sonoma and Napa counties like I’ve never seen before and leaving a scar on all of our hearts. I got to see firsthand the importance of community and was proud to see our bleeding disorder community come together to […]
Dear Addy, What is the best way for me to contact my legislators when policy issues affecting the bleeding disorders community arise? Signed, Alert Advocate Dear Advocate, HFA’s Take Action Center has all you need to contact your legislators, including talking points on issues affecting the bleeding disorders community. Watch this short video on using the […]
Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session, was […]
Dear Addy, I’m a new mom and my husband and I just learned that our baby has hemophilia A. We are overjoyed at becoming parents and overwhelmed with next steps. Could you offer tips for building a relationship with a hematologist? Signed, New Mom Dear Mom, You’ve come to the right place! Knowing where to […]
I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia. They can’t understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds. How could anyone find good in dealing with a nonsensical insurance company? Obviously, I could […]
The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can’t remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]
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