Very important. We need patient volunteers for the new Alnylam treatment. The Alnylam study has officially begun. The first part of the study is called the Natural History study and requires very little from you. You will go to the porphyria center nearest you. Once the main study begins early next year, you can also join that and you will be taking the new treatment . Please join. This new treatment is expected to revolutionize treatment of acute porphyrias . You can either drive to the center or be flown depending on the distance for the natural history site . When the next study begins, patient volunteers will be flown all around the country just as the epp patients were done during the epp trials. By the way, several ppl said that people at the APF, like me , ran up a $90,000 travel bill. That was a shameful thing to say. Instead, the cost was for almost 200 patients taking over 650 trips to the porphyria center for research. Next, I have heard that some ppl think that if they volunteer for a research study, the expert will take away their diagnosis because their levels were not high enough. These experts have studied porphyrias for forty years. They certainly know if a person does or doesnt have the disease despite a low level. Next, if you gave been diagnosed with an acute porphyria and dont have insurance, the study will do DNA on you for free. Please be a medical hero and become a research patient. The porphyria centers are Birmingham ,AL. Dr Bloomer NYC , Dr Robert Desnick Salt Lake City, Dr John Phillips Galveston, TX. Dr Karl Anderson Charlotte, NC. Dr Paul Schmeltzer , Dr Herbert Bonkovsky San Francisco, Dr Montgomery Bissell. Please PM me or call the APF 866.apf.3635
Posted on: Mon, 22 Sep 2014 20:14:42 +0000
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