Platelet Disorder Support Association

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Direction

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15 years 2 months ago #6690 by meganmarie98
Direction was created by meganmarie98
Hello my name is Megan and My daughter and I have a rare platelet defect called storage pool platelet disorder. Currently, from what I can find there are no groups or organizations that support this genetic platelet defect including PDSA. I am looking for anyone that may have insight or know of any organization that is currently supporting this disorder Please reply to meganmarie98@yahoo.com . Concerned that my daughter and the rest of our family who have to platelet defect will go without direction or focus for treatment or cure. Please anyone who maybe able to help. Thankyou
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15 years 2 months ago #6691 by server
Replied by server on topic Re:Direction
Hello Megan, welcome to the boards! I did a quick search on bing of your disorder and quite a few sites came up. I didn't go to to many of them, but there is quite a bit of info out there about it. In any case, you are more than welcome to post anything here you want to share! We may not all have the exact same disorder but we all do care and are here for you!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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15 years 2 months ago #6695 by alisonp
Replied by alisonp on topic Re:Direction
Have you tried haemophiliac organisations - the UK one deals with all sorts of bleeding disorders.
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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.


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