Monday, March 11, 2013




The Porphyria Research Consortium needs YOU.  The Consortium can receive a government research grant as long as they have enough participants.   At this point, they need 200 more patient volunteers. 
Since the creation of the Research Consortium, they now have the best opportunity to make a major impact on the treatment of all of the porphyrias.  But nothing can be accomplished without YOU. 
I have had the privilege of participating in five research projects and hold a deep sense of personal gratification that patients around the country are now benefiting from that research.  My family and I have volunteered for this newest research.  I know that many of you would like to make this same sort of life saving contribution to people with porphyria.
At present, the researchers are performing a number of porphyria research projects.  First, they have an ongoing Longitudinal Studythat requires that you answer a number of questions on a survey.   
The researchers are also performing a very important research project with people who have an Acute Porphyria and have recurring attacks.  If you have recurrent attacks or you are interested in volunteering for the equally important Longitudinal Study (for all Porphyrias), please contact the APF.  After we share your name with the researchers, someone from the research team will contact you. Family members are also asked to participate in these research projects, as well. 
In these studies, you are not required to take a new drug; rather, you are asked a series of questions.  Please consider your participation in either or both projects.  Nothing can be done to improve our treatment or diagnosis without our participation in the research project.   Your time commitment will be very little compared to the great benefit for all. 
For yours and your children's health, please consider volunteering as a research patient.  Then call or email the APF with your contact information and the research team will shortly thereafter contact you.   
This is your opportunity to be a part of life changing and lifesaving research. 
Thank you,
Desiree Lyon Howe

APF : or  1.866. APF.3635.
Porphyria Consortium Registry for research:

Remember….Research is the key to your cure!

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