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A new feature for the Porphyrias Contact Registry

From: Dr. Robert Desnick, Principal Investigator
Dean for Genetic and Genomic Medicine
Professor and Chairman Emeritus
Genetics and Genomic Sciences
Thank you for your interest in the Contact Registry of the Porphyrias Consortium, which is part of the Rare Diseases Clinical Research Network supported by the National Institutes of Health. The Contact Registry is important in helping us learn more about the porphyrias. 

New Survey Available
We are proud to announce a new feature for the Porphyrias Contact Registry. There is an additional survey available which will allow you to enter additional information about your medical history. The additional survey will take approximately 5-10 minutes to complete and will help us understand more about your specific porphyria. You may also update information you previously entered. All information will be kept confidential.

To enable this feature, please log in to your account through the link provided below. You will be asked to sign a new consent form and then you will be able to update your contact information. 

If you have questions on how to long in or join the Regitry, please contact
Denise Shereff, MLIS, AHIP
Contact Registry Administrator
RDCRN Data Management and Coordinating Center
University of South Florida
College of Medicine


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