The TEMPI Syndrome

Telangiectasias
Elevated Erythropoietin & Erythrocytosis
Monoclonal gammopathy
Perinephric fluid
Intrapulmonary shunting

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The TEMPI Syndrome is a very rare orphan disease where an affected individual displays five hallmarks from which the acronym is derived: telangiectasias, elevated erythropoietin and erythrocytosis, monoclonal gammopathy, perinephric fluid collections and intrapulmonary shunting.

As of March 2022, we have identified a total of 34 people with TEMPI syndrome in the world.

 

Click on the Google map --> to see where the patients are located.

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2018 International TEMPI Symposium

On November 30, 2018 the first TEMPI symposium was held as part of the American Society of Hematology annual convention in San Diego, California. We brought together an international group of physicians to discuss the pathophysiology of this unusual condition and to put together a plan for sample collection and research to help best define treatment options for our patients.  

Do you think that you or your patient might have TEMPI Syndrome?

Please download and complete our TEMPI Syndrome worksheet.

Collecting and banking a bone marrow sample? 

Please feel free to use our protocol for banking bone marrow mononuclear cells.

Shipping bone marrow internationally?

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Consider the PAXgene bone marrow RNA tubes and kit (Qiagen)

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