Researchers are currently accepting participants for a 6-month Natural History Study of Acute PorphyriasAlnylam Pharmaceuticals, Inc. is conducting 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 in the last 12 months or have used Panhematin® or other medicines to prevent attacks. This study will not require you to change any current medication(s) nor require you to If you take part in this study, it will greatly help clinicians and researchers to understand more about porphyria. You will receive study-related medical care and monitoring.This study will help to learn information about porphyria that could be important in the development of new therapies for patients with Acute Porhyrias.
"Remember....Research is the key to your cure!"
Friday, October 10, 2014
Researchers are currently accepting participants for a 6-month Natural History Study of Acute Porphyrias
Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...
Happy Thanksgiving everyone 2017
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...
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