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ITP Centers of Excellence? 5 months 3 weeks ago #72820

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Hello everyone. I'm new to the forum but have been dealing with ITP for four years now with platelets hovering around 50 and three episodes below 10 (and one really eye opening time it got down to 1. Wondering if anyone here knows of any ITP Centers of Excellence. I've always read that for any serious condition you want to get care or at least an opinion from institutes and medical centers that see a lot of the cases, are involved in trials, etc. So, Cleveland Clinic for heart disease, MD Anderson for cancer. Is anyone aware of such centers for ITP and if so, where? Thank you!

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ITP Centers of Excellence? 5 months 3 weeks ago #72821

MelA Offline Posts: 1106 Karma: 2 Thank you received: 367	I've never heard of an ITP Center of Excellence - maybe someone has and will respond. I do know I have a wonderful hematologist/oncologist who loves blood and knows a heck of a lot about ITP. I really do like him. "Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP Centers of Excellence? 5 months 2 weeks ago #72856

JJ
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We have them in the UK but not heard about the US but there are specific names that are well known as experts in the ITP world. The names on this report are some of the best. Two there that I know are experts in America are Terry Gernsheimer and David Kuter.

ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the

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ITP Centers of Excellence? 5 months 2 weeks ago #72857

mrsb04 Offline ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use. Posts: 2116 Karma: 7 Thank you received: 608	I am fortunate to live a 20 minute train ride away from one of the UK centres and my haemo is the clinical lead. My GP has absolutely nothing to do with my ITP care. Patients have 24/7 access to the centre via the phone for queries or advice. Very comforting knowing one is always dealt with by experts.
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ITP Centers of Excellence? 5 months 1 week ago #72858

20Kplus Offline Posts: 2 Thank you received: 0	Thank you all, especially @JJ - very helpful!!
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