Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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. […]
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 caribe帽os. Arropada por el Mar Caribe y el Oc茅ano Atl谩ntico. En donde se habla espa帽ol 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鈥檛 anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]
鈥淪o, he鈥檚 still wearing the helmet?鈥 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 颅 I鈥檝e 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 鈥 many people worry about public speaking! Use these tips to help you become more confident and comfortable speaking during legislative meetings. Hopefully you鈥檒l find this advice beneficial 鈥 […]
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鈥檚 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鈥檝e 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聽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鈥檓 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? 聽Signed, New Mom 聽Dear Mom, You鈥檝e 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鈥檛 understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds.聽 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鈥檛 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 […]
Dear Addy, Are there ways for my teenage son to save money for college, without endangering his health coverage? My son is currently enrolled in Medicaid under our state鈥檚 Katie Beckett program for children with long-term disabilities. Signed, Savvy Saver Dear Saver, Here鈥檚 one option you and your son may wish to explore: opening an […]
When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]
Swimming is often recommended as an ideal form of exercise for people with bleeding disorders for a few different reasons. To begin with, swimming allows one to strengthen their muscles in a way that doesn鈥檛 put weight on the joints, and therefore reduces the likelihood of bleed due to impact or pressure. It also enables […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits!聽Our guests on this聽podcast聽are聽Kathryn Clark, a retired dietician, and Eric Burgeson, an active young adult with hemophilia. Kathryn and Eric聽iscuss ways to keep costs low at the grocery store […]
By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits!聽Our guest on this聽podcast is聽Karen Sullivan, retired professor of Health/Fitness at Marymount University. Tune into hear Karen discuss聽how to build sustainable fitness habits and how to get back on […]
If you look up National Caregiver鈥檚 month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President […]
Dear Addy, I鈥檓 applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber Dear Subscriber, The聽Open Enrollment Period is a timeframe each year when health insurance plans or聽HMOs (health maintenance organizations)聽are required by law to accept applications […]
Sign up for E-mails, Dateline Magazine, and other ways to stay connected.
CONTACT HFA
999 N Capitol Street NE Suite 201
Washington, D.C. 20002
Phone: 202.675.6984
Toll Free:
Fax: 202.675.6983
Email: info@hemophiliafed.org
HELPFUL LINKS
FOLLOW HFA
CERTIFICATIONS
