Friday, July 25, 2014

Natural History Study goes International!

We are looking for patients to engage in a Natural History Study in collaboration with investigators from the American Porphyria Consortium to learn more about the symptoms and the treatment of patients with Acute Porphyrias.

You may qualify to participate in this study if you have the diagnosis of acute intermittent porphyria, variegate porphyria or hereditary coproporhyria and have experienced at least 3 acute attacks or have used panhematin, normosang, or other medicine to prevent attacks in the last 12 months. This study will not require you to take any new medication or treatments.

Please, contact the APF, or pm me here if you live close OR are willing do drive (the driving expenses will be reimbursed to you) to the following cities: Birmingham, AL; San Francisco, CA; New York, NY; Charlotte, NC; Galveston, TX; Salt Lake City, UT, a
nd in the following countries in Europe: UK, France,                                                      Switzerland, Germany, Italy, Sweden, Norway and Finland. ***

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

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Genetic Changes in Porphyria

Each form of  porphyria  results from mutations in one of these genes:  ALAD ,  ALAS2 ,  CPOX ,  FECH ,  HMBS ,  PPOX ,  UROD , or  UROS . ...