Monday, November 19, 2012

Important We NEED YOU!


  • The Porphyria Research Consortium met in Boston last week. They are involved in much research for every type of porphyria. In addition, they told me that they really need more patients to register on the registry (this is a means for us to tell the govt that we need research funds) and to answer the research questions. There is a second set of questions posted, too, that they need everyone registered to answer as part of the long study 5 years.


    • www.porhyriafoundation.com 


      or call 866-apf-3635


No comments:

Post a Comment

Athi Koti AIP Experience

Type of Porphyria:  Acute Intermittent Porphyria (AIP) Sive Ngalo of Ekasi Hub interviewed Athi Koti. Below is my story       ...