Platelet Disorder Support Association

Join Us:

Become a Member

Support Us:

Make a Donation
    Remember Me     Forgot Login?   Sign up   •  Web site Help & Info
!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

ITP Centers of Excellence?

More
1 year 4 months ago #72820 by 20Kplus
ITP Centers of Excellence? was created by 20Kplus
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!

Please Log in or Create an account to join the conversation.

More
1 year 4 months ago #72821 by MelA
Replied by MelA on topic ITP Centers of Excellence?
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

Please Log in or Create an account to join the conversation.

More
1 year 3 months ago - 1 year 3 months ago #72856 by JJ
Replied by JJ on topic ITP Centers of Excellence?
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
The following user(s) said Thank You: 20Kplus

Please Log in or Create an account to join the conversation.

  • 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.
More
1 year 3 months ago #72857 by mrsb04
Replied by mrsb04 on topic ITP Centers of Excellence?
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.  

Please Log in or Create an account to join the conversation.

More
1 year 3 months ago #72858 by 20Kplus
Replied by 20Kplus on topic ITP Centers of Excellence?
Thank you all, especially @JJ - very helpful!!

Please Log in or Create an account to join the conversation.

Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2024, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use