NHF’s 58th Annual Meeting

From Thursday to today I attended the NHF’s annual meeting in Philadelphia, the city of “Brotherly Love.” I’ve been attending each year since 1991, and they grow bigger each time! It was a great pleasure to meet up with so many friends and acquaintances.

The theme of this year’s meeting was “Opening New Doors.” Particular attention is always given to new families of babies diagnosed with a bleeding disorder, to orientate them to our community and provide resources. There is a social opening night, welcoming ceremony, many sessions headed by experts on a variety of topics, dinners, a wonderful outing to the Franklin Institute and a final evening that features a band, dancing, lots of food and more. This may have been the biggest NHF meeting ever, with thousands in attendance. It was a beautiful sight to see on the dance floor, when the band took a break, so many little boys of all ages whooping it up, running, sliding and dancing. Healthy and active, these boys are living proof of the benefits of prophylaxis, plentiful medicine and regular HTC visits.

I gave three presentations: a brief one at ZLB Behring’s headquarters as part of its open house for the Philadelphia community (ZLB, the Pharma Formerly Known as Armor, Centeon and Aventis Behring, is my oldest business relationship in the community, spanning 18 years!); a talk on “Prophylaxis and Insurance,” and how insurers may be targeting prophy next on the cutting block; and a look at “Hemophilia History as His Story”… the history of our community from 1987, and how it paralleled my son’s life. I’ve never discussed publicly our story and what we went through, and it was really fun to show photos and put it in the context of what was happening in hemophilia, and the world in general. It was rather sad to also note publicly the many consecutive years (oh, about 17) that the Boston Red Sox did not win the World Series!

As always, the companies that fund our community were there with booths, give-aways, information and games for the children. Strolling through the displays and booths gave families the chance to ask company reps questions and to compare products and services.

There were too many excellent sessions to discuss here. But some hot topics included reimbursement, healthy joints, physiotherapy, and surviving natural disasters through planning. Be sure to sign up for “HemAware,” the NHF’s publication, which I am sure will review the meeting in greater detail. And try to attend a national meeting sometime! The next one is November 1-3, 2007 in Orlando. I hope to see you there!

Thanks to the NHF staff for their phenomenal teamwork in bringing this event to our community: it was a huge success in every way.

Next week: I’ll be touring the Bayer Kogenate FS plant in Berkeley, California. Please check in to see what it’s like!

2 thoughts on “NHF’s 58th Annual Meeting”

  1. I too had a wonderful experience attending NHF 2006. I encourage people to attend next year in Orlando. At the event I chatted with Laurie a few times and man,many others. Some new gacws and some I hadn’t seen in the past few years. I hadn’t been to an NHF since 1998? in Dallas. I saw first-hand what it’s like to have inhibitors. I consider myself extremaely fortunate not to have ever had the problem of inhibitors. I saw that a 27 year old who has lived with inhibitors was suffering from the same joint problems I have due to the fact that I didn’t receive factor at all the first five years of my life. I am 44 now. I saw a man who has had both elbows replaced, both knees replaced, and one ankle replaced. I have only had one knee replacement so far.
    Tom Albright

  2. Thanks for that information. It sounds sounds like I missed an awesome meeting. I am always moved by the number of attendees. I love talking to newly diagnosed families and seeing people from previous meetings. I know there were many choices to choose from as far as meetings go. There have been times when I even did half meetings so I could attend two that were being held at the same time. I heard there was meeting about pain management, healthy joints and being prepared in an emergency just to name a few. Don’t get me started on the food. Anyone who has ever met me knows that I love dining and pretty looking food and grabbing treats from all the exhibit booths. The meal always seem the best on the last night. I better stop now speaking about food and treats cause I could go on. Not to mention raffles and prizes and hanging out networking with all those names that I used to only see in print. Big as life, like you. Your presentations are awesome. I like you speak about parenting and pharmacutical (spelled wrong) companies. I learn a lot from you. You communicate so well(effectively). It is not your fault that I do no comprehend most human resource issues like; insurance, taxes, wages etc. Those topics go right over my head no matter how well is explained. Anywho…(rambling) thanks for sharing your experiences with us. I hope our family will be able to attend the next meeting in Orlando.

    ps I had to create a blog (?) to leave a comment.
    Theresa Fladager


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