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Tuesday, November 25, 2008

Blood Clot

This was the best slide show I saw at the national conference. Dr. Roshni Klkarni gave a fabulous session on how blood clots and what a diagnois means to us. Here is the website where you can view the animations:

Insurance Meeting NHF Conference

Sally McCarty; Beth Sufian, JD; David Linney (speakers at this session)

This session was kind of depressing, but invigorating at the same. Depressing because it's hard to think that most of the hemophilia community is still struggling to get coverage. Invigorationg because it fired me up to go talk to my legislators!

Here are a couple things I did learn:

Know the key terms when dealing with insurance. Do you know what COBRA is? What is your "premium"? Will adding your son or daughter raise your office premiums? Does your insurance policy cover what you need?

NHF is starting a new program called Insurance 360. This will deal with insurance reimbursement issues. Currently you can call the HANDI number. 1-800-42HANDI

If you have any legal questions, you can call the number below.
Bleeding Disorders Legal Hotline - call Toll Free 1-800-520-6154- Funded by a Grant from Baxter and Endorsed by the National Hemophilia Foundation

Washington Days will be February 25 and 26. "Join NHF as they meet with your legislators to get support for raising lifetime insurance caps and other key issues."

**My husband just got group insurance for his small business. We found out after the fact that if we add Trenton on, we would not be able to use our wonderful home helath care company ARJ. We would have to get Trenton's factor from the insurance company! Blaa blaa blaa So, it looks like I'll be going back to work soon!

Wednesday, November 19, 2008


This was forwarded to me. It is a new program by CSL Behring.

CSL Behring launches GamesFacesTM program at National Hemophilia Foundation annual meeting Interactive online initiative provides six months of physical challenges for patients with hemophilia A Denver, CO-November 19, 2008-CSL

Behring announced today it launched the first challenge of GamesFacesTM, a family-oriented online initiative for patients with hemophilia A, at the 60th Annual Meeting of the National Hemophilia Foundation (NHF). GameFaces is designed to encourage real-life physical activity through a series of three customized challenges based on the individual's age, disease severity and current level of physical activity. Participants can now log on to the program website at, create their GameFaces character and begin the first challenge, which will run from today through January 10, 2009. CSL Behring, the providers of the hemophilia treatment Helixate® FS (Antihemophilic Factor, Recombinant), developed GameFaces to inspire hemophilia A patients to participate in physical activities and also to allow them to feel connected to other patients with this serious bleeding disorder. At the conclusion of each challenge period, those who have completed the challenge will be entered into a drawing to win a Nintendo® Wii(tm) game console. Nintendo Wii has been recognized as the next generation of video games and is known to inspire physical activity through games that require movement. "We are pleased to officially unveil GameFaces to the hemophilia community at the NHF's annual meeting, where the theme this year is 'Reaching New Heights'," said Garrett E. Bergman, M.D., Senior Director, Medical Affairs, U.S. Commercial Operations at CSL Behring. "GamesFaces promotes the kind of daily physical activity that will empower hemophilia A patients, from those with a mild form of the condition to those with the most severe form, to reach new heights in developing a healthy and safe lifestyle." "We appreciate CSL Behring's commitment to our children and their specific needs," said Rhonda Boni-Burden, mother of Alex, a 14-year-old boy with severe hemophilia A. "A program like GameFaces enables our children to build their self-esteem and helps manage these bleeding disorders, which is important to our families' quality of life." The program's physical challenges include both outdoor and indoor activities, which patients can complete on their own or with family and friends. The second and third challenges will occur in 2009 from January 10 through March 7 and from March 7 through May 2, respectively. Challenges are designed to be completed over a one-month timeframe during the challenge interval. Participants can track their progress by logging on to the program's website at Children under 18 must have a parent's permission to participate. About HemophiliaHemophilia is an inherited bleeding disorder characterized by prolonged or spontaneous bleeding, especially into the muscles, joints, or internal organs. About 15,000 Americans have hemophilia. The disease is caused by deficient or defective blood coagulation proteins known as factor VIII or IX. The most common form of the disease is hemophilia A, or classic hemophilia, in which the clotting factor VIII is either deficient or defective. Hemophilia B is characterized by deficient or defective factor IX.

For more information, visit ### Contact:Sheila A. Burke, Director, Communications & Public Relations Worldwide Commercial Operations CSL Behring610-878-4209 (o)484-919-2618 (c)

Tuesday, November 18, 2008


Patient Services Items Programs
This is a national, non-profit organization that provides help to people in the bleeding disorders community. (They help other families with chronic conditions as well.) If you have insurance questions, or need help paying your monthly premiums - call them! If you need knee pads, elbow pads, a cryo-cuff - call them! There is a request form that you need to fill out. "PSI will consider your request independently, based upon a consensus list and need." (from their brochure)

National Hemophilia Foundation - Denver, CO

Hello All-
I'm back from a great conference in Denver. I spent three full days learning as much as possible about hemophilia. I have sooo much to share. I will add posts about the different sessions I attended over the next few days. If anyone has questions, throw them out there! I don't know that I can answer them all, but I'm sure I can help you find the answer.