The American Porphyria Foundation, located in Bethesda, MD, is dedicated to improving the health and well-being of individuals and families affected by Porphyria, a group of eight inherited genetic disorders. Their mission focuses on education, advocacy, support services, and research for the prevention, treatment, and cure of Porphyria. Through their relentless efforts, they provide comprehensive education for the Porphyria and healthcare community, empowering patients to add their voice to the Porphyria community.
With a strong emphasis on research, the American Porphyria Foundation recognizes that it is the key to finding a cure for Porphyria. They work tirelessly to support observational studies, clinical trials, and surveys, ensuring that the latest advancements in Porphyria research are accessible to those in need. By offering a range of support services, including a patient portal, safe and unsafe drug database, and emergency room guidelines, the foundation aims to provide individuals with the resources they need to manage their condition effectively. Through their dedication and commitment, the American Porphyria Foundation continues to make a significant impact in the lives of those affected by Porphyria.
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