Friday, May 26, 2017
Important EPP Survey URGENT ASAP!!!
Dear EPP Community,
As you know, the diagnosis of EPP is often delayed for many years. Researchers at the Icahn School of Medicine at Mount Sinai are conducting a survey study to learn more about the delayed diagnosis of EPP and how to better educate providers. This is a short survey (~5 min) for adults with EPP, or parents of children with EPP. If you would like to learn more and participate, click on the link below.
Sajel Lala, MD
Hetanshi Naik, MS, CGC
Manisha Balwani, MD
Comprehensive Porphyria Diagnostic and Treatment Center
Icahn School of Medicine at Mount Sinai
Department of Genetics and Genomic Sciences
"Remember....Research is the key to your cure!"
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