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X-WR-CALDESC:Events for Hemophilia Alliance
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DTSTART:20240310T070000
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DTSTART;TZID=America/New_York:20241211T130000
DTEND;TZID=America/New_York:20241211T140000
DTSTAMP:20260531T121352
CREATED:20241126T181513Z
LAST-MODIFIED:20241126T182239Z
UID:69641-1733922000-1733925600@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from CSL Behring - Learn about HEMGENIX from the patient perspective
DESCRIPTION:Date: Wednesday\, December 11\, 2024\nTime: 1:00pm – 2:00pm ET \n \n  \n  \n  \n  \n \nTOPIC: \nLearn about HEMGENIX from the patient perspective \nOBJECTIVE: \nMichael will share his personal experience after receiving HEMGENIX \nRECOMMENDED AUDIENCE: \nHTC providers\, social workers\, administration and support staff \nSPEAKER: \nMichael – Common Factors Advocate Hemophilia B \n \nMy Life at a Glance – At the age of four\, I was diagnosed with hemophilia B factor IX deficiency. My parents told me that this disorder would limit me and that I would most likely have to progress through life with caution. So\, at a very young age\, I was forced to make an adult decision. I had to either learn how to manage \n my hemophilia or accept the possible limitations that were awaiting a severe hemophiliac. When I was a kid\, I made sure to not let hemophilia get in the way by staying on top of managing it. It was hard to accept help from anyone because I wanted to do it on my own. It was my superpower\, not theirs. \nMy previous local support group was amazing. They organized scholarships and had activities that were safe for hemophilia patients. It was a close-knit community. I even volunteered there! After finding the right treatment for me\, I have noticed myself living a more stress-free lifestyle; I no longer have to infuse a minimum of twice a month to maintain my factor levels. \nMy Message to the Community – Hemophilia is our superpower. It’s time to don that cape and advocate for yourself.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-csl-behring-learn-about-hemgenix-from-the-patient-perspective/
CATEGORIES:Members Only
ATTACH;FMTTYPE=image/jpeg:https://hemoalliance.org/wp-content/uploads/2023/12/CSL-Behring.jpg
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