EPP DELAYED DIAGNOSIS SURVEY

EPP DELAYED DIAGNOSIS SURVEY

Thank you for your participation in the recent survey on EPP delayed diagnosis! Over 125 responses were received, and the survey is now closed. This will give the team at Icahn School of Medicine at Mount Sinai a great sample to analyze. The purpose of this survey was to understand the path to diagnosis so that we will be able to increase awareness in the group of physicians most likely to see potential EPP patients.

Some researchers at the Icahn School of Medicine at Mount Sinai are also part of The Porphyrias Consortium (PC). The PC is hard at work supporting the Porphyria community with multiple research studies. Take a moment to check out what they have going on here:

https://www.rarediseasesnetwork.org/cms/porphyrias/

 

CALLING ANY ART GALLERY OWNERS....

If you own an art gallery or have a contact with one, please call Edrin at the APF office on 866-APF-3635.

 

"Remember....Research is the key to your cure!"