Wednesday, November 4, 2015

Research News

Research News
We would like to let you know that the two satellite clinics in Seattle, WA and Miami, FL are now accepting Longitudinal Study patients for research. Another research center in Cleveland, OH will be ready to accept patients soon.  
There are very important research studies ongoing right now that need research volunteers. 
  • Everyone can participate in the Longitudinal Study. All you need to do is fill out questionnaires that reveal important facts about porphyria if enough people enter the study. 
  • Volunteers are needed for the Natural History part of the Alnylam Study to show the potential of their drug to prevent attacks.   Fly down and back to the research centers with all expenses paid for you.
  • Research volunteers are also needed for the Panhematin study to verify that Panhematin can be used to prevent attacks.  Although patients have been given the drug for a long time to prevent attacks, this study will give doctors the better evidence.
  • It is important to join the registry (http://www.rarediseasesnetwork.org/porphyrias/index.htm), so that your name will go directly to the researchers. If you need help with the registry, just call the APF and Natalia or Jessica will help you.  For details on how you can participate, call the APF at713.266.9617.





"Remember....Research is the key to your cure!"

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Happy Thanksgiving 2017

Happy Thanksgiving everyone 2017