Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
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 […]
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! l learned so […]
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 […]
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 […]
Dear Addy, I attended Symposium in April and gained a lot from the advocacy sessions. I want to incorporate what I learned at Symposium into my regular routine. What recommendations do you have for making advocacy an everyday activity? Signed, Maintaining the Momentum Dear Momentum, Thanks for attending HFA’s Symposium last month in Providence. It’s […]
In conjunction with Volunteer Appreciation Month, we are highlighting volunteers who help to make the bleeding disorders community inclusive and informative. Today, we are proud to recognize one of our recent award winners at our 2017 Symposium, Darcy Zwier! The “It Takes a Village” award is provided to an individual who goes above and beyond in […]
By: Kyle McKendall, Staff Member Photography by Kevin Daniels Taken from the Summer 2016 issue of Dateline: Full PDF available here For the first time ever, HFA offered a comprehensive Spanish-language program at its annual Symposium, held in Las Vegas from March 30-April 2, 2016. More than 50 attendees participated in the program and attended […]
For the past four years I have been participating in Hemophilia of South Carolina’s legislative days. During this annual event, I meet with our local representatives to share my experience of raising a child with a bleeding disorder and why it is important to support state programs that support our community. In prior years, I […]
My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance. My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in […]
Show Us Your #HFAStrong Kids! The holidays are upon us once again! Tis the season for recipe cards coming out of the cabinets, eating, regular trips to the grocery store, eating, healthy New Years resolutions and yes, eating! Do you have a budding chef or nutrition expert in your home? Do they like to see themselves […]
On Saturday, March 28, 2015, Rich Pezzillo, HFA’s Communication Director, talked on St. Louis’ The Carney Show 550AM, about the ABC Secrets and Lies comment, the importance of Symposium, updates about the work being down around specialty tiers on a local and national level, and how HFA and Gateway Hemophilia Association are raising awareness about bleeding disorders.
For someone who spends her days organizing events for a living, it always surprises me how much I look forward to the HFA Symposium each year. It has a similar structure to many of the events I plan – with plenary sessions, workshops, exhibits, and networking events – yet it feels completely different. Yes, […]
In March 2014 I attended my first HFA conference, and for the first time in my new journey as a hemophilia mother I didn’t feel alone and left truly inspired. Beyond encouragement, I also received education which helped me to accept my own diagnosis of hemophilia. For example, I met Julie, who told me about […]
At Symposium 2014 the 9-12 year olds enjoyed learning about healthy snacking options and why eating healthy is so important for their growing bodies. They watched as the hotel chefs prepared homemade trail mix and then had the opportunity to create their very own individual trail mix for their afternoon snack. Try setting up your […]
The thing about kids is that they grow up they move on and make their own choices. That’s what Max did – he moved on and made his own choices. That’s not to say he has always made GOOD choices. But what would the point of all the years of teaching him to be independent […]
In 2008 my husband, two kiddos and I traveled to our first Hemophilia Federation of America (HFA) annual Symposium. We had been to a couple of NHF meetings since the kids had been born but we did not know much about HFA. Kim Bernstein, a truly talented community advocate, had been pushing me that I […]
The FitFactor program encourages physical activity for individuals with bleeding disorders to strengthen muscles and joints and help reduce the frequency of bleeding episodes. We understand that choosing an exercise routine is very personal and that a “one size fits all” philosophy just doesn’t apply when choosing a physical activity program that is right for […]
One of the things that surprised me most about joining the bleeding disorders community was the sense of family. Thomas’s diagnosis was the first in our family history (although we’d later find out I’m a carrier), so the shock of hemophilia was hard to shake, but the open arms we met made it a bit […]
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