Monday, November 26, 2012

Extremly Important~ National Porphyria Registry

Your participation in the national Porphyria Registry is EXTREMELY Important to Porphyria research.  The Registry is NOT the same thing as joining the APF, instead, it is a site which goes directly to the Porphyria Consortium of experts.

We NEED Your participation!  We are in need of Acute Porphyria Patients to join.  So if you have Acute Porphyria please visit and click on Porphyria Registry and  follow the instructions, it takes but just a few moments of your time.
Once you register you will be contacted by phone or email to answer additional questions to verify your participation in the studies.  Participation in research does not mean you have to take any experimental drugs, rather you can answer questions about porphyria. 

 These research projects are critical to your care now but in the future for family members or someone you know.  These projects also determine the incidence of porphyria in the US.

So now it's up to you!  Will you do your part it does not cost you anything.  We know your busy every day and we hope that you will participate before it is to late.  

Remember RESEARCH & YOUR HELP is the KEY!

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