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Leslie Raffini, MD, and Regina Butler, RN, were quoted in the Philadelphia Inquirer on a story featuring a CHOP patient family living with hemophilia, an inherited bleeding disorder that prevents blood from clotting properly.
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A look back at the last five decades of treatment options to what lies ahead with additional potentially curative gene therapies.
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Read about the prevalence of inherited thrombophilias (IT), potential benefits and limitations of IT testing in healthy children, and recommendations from Children Hospital's experts.
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Recent gene therapy trial for hemophilia B showed promising results, with patients’ average factor IX level of 32 percent after treatment. CHOP aims to open a hemophilia A gene therapy trial modeled after the hemophilia B trial.
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Mike Schiller, MSW, LSW, summarizes the impact the Affordable Care Act has had on patients with bleeding disorders.
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Find answers to what the National HTC Patient Satisfaction Survey is, why it was conducted, and what will be done with the results. See how CHOP was ranked.
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Mary Louise Mattia helps make the Hemostasis and Thrombosis Center (HTC) run! She is the HTC program coordinator and data coordinator, and is the voice you hear when you call the HTC office.
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One of our HTC families created a fundraising project to support hemophilia research through the CHOP Foundation. The response has been so terrific that Zoe, the sister of our patient “Iron Max,” has upped the fundraising goal multiple times.
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CHOP's Transition to Adulthood Program website has a Resources section that includes age-specific tip sheets for parents or guardians and for children and youth, videos and information about in-person workshops that are hosted for families and teens.
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As part of our ongoing goal to provide the best care possible and to collect required data, all patients between the ages of 12 and 22 will be asked to complete a patient experience survey when you come to clinic for your annual comprehensive care visit.