Wednesday, November 9, 2016

ALL USA PORPHYRIA PATIENTS Enrollment for Longitudinal Study













ALL USA Porphyria patients.

We need each of you to sign up for the studies of Porphyria. All types are able to join this study. The Porphyria Consortium are looking for volunteers now for the longitudinal study. Please read the following study opportunity: click on the below links to register and if you have any questions please contact the APF 1/866/APF/3635. If you have any questions please call the APF during normal business hours or leave a detailed message with a call back number and we will reach out to you.

Step 1) https://clinicaltrials.gov/ct2/show/NCT01561157?term=Porphyria&rank=4

Step 2) http://www.rarediseasesnetwork.org/

{Here you can join the contact registry. Once you join the RDCRN Contact Registry, you will receive emails with information about current research studies for your disease. In these emails, you will be given information about how to join the research study. You will also be able to contact the researchers to ask any questions about the study.}
Please consider this study for all of those who suffer from Porphyria Disease. Please sign up and share this message with anyone who may benefit.

1 comment:

  1. Is this a study where patients will receive Scenesse ?

    ReplyDelete

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