Monday, March 18, 2013

From the Desk of Rob Saupe: EPP Patient


 From the Desk of Rob Saupe:  EPP Patient

As many of you know I volunteered for another research opportunity with the Porphyria Consortium. I had the privilege of going to the Porphyria research lab at the University of Utah Medical Center and met with Dr. Parker and Dr. Phillips. The meeting went great and they are working very hard on different research projects for all the Porphyrias.

The Porphyria Consortium has been approved for a grant to help them continue doing research on the Porphyrias. The problem is that unless more people sign up they will not receive the funds necessary for all the research projects. Most of the research projects consist of you answering questions and maybe a blood draw. No Travel is necessary for the majority of the research studies. For the Blood draw they will send you a kit that includes a prepaid postage to ship it to the research lab. Just joining the registry so that there are more documented cases of Porphyria will help a lot! That simple!

Please, please join the registry today. And please consider joining one or as many of the research projects as you can. We have an opportunity to change our futures and the futures of our loved ones. It's now in our hands to make a difference. Be a solution and act today.

Click the link below and sign up.
If you need help enrolling in the registry or help with logging into an existing account, please contact the APF office toll free at 1-866-APF-3635.

Thank you, thank you, thank you!


Remember....Research is the Key to your cure!

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