Porphyria is the term used to describe a group of metabolic disorders that affect the nerves, skin and gastrointestinal tract—or in some cases, all three. Because porphyrias are rare, they pose a number of challenges to patients, from getting an accurate diagnosis, to finding a healthcare provider with the knowledge and experience to treat the disorder, to finding reliable information about treatment, triggers and the latest research about porphyria. Here, we’ve put together a list of resources to help make the search for reliable information easier on patients and caregivers. Use the links below to find information about specific types porphyria, finding a porphyria expert, working with a healthcare provider, clinical trials and financial assistance to help pay for porphyria treatment.
American Porphyria Foundation The American Porphyria Foundation (APF) is among the best and more comprehensive resources available for porphyria patients and caregivers, with pages dedicated to patient education, patient advocacy, support, research, and treatment. You’ll find detailed information about the different types of porphyria, as well as information about treatment, diagnosis, diet and nutrition, drug safety and genetics. The APF also maintains a list of porphyria experts and porphyria labs in the U.S. There is also a section of the site for healthcare providers, a database of drugs that may trigger porphyria attacks and emergency room guidelines.
National Organization for Rare Disorders (NORD) The website for the National Organization for Rare Disorders (NORD) is worth a visit anytime you’re looking to learn more about a rare disease such as porphyria. The page on porphyria features information about the specific types and the symptoms associated with each. It also features information about what researchers know about genetic causes of porphyria. There is also helpful information for anyone interested in clinical trials for investigational therapies for porphyria.
HealthWell Foundation® If you need help paying for porphyria treatments or prescriptions, you may want to contact the HealthWell Foundation. This organization provides financial assistance for people with chronic conditions who need help with healthcare costs. They have a page for porphyria patients that describes the type of assistance they provide and the eligibility requirements. A link to the online application can be found here.
National Human Genome Research Institute (NIH) If you’re looking to go more in-depth with your porphyria research, visit the NIH’s page on porphyrias. In addition to an overview of these disorders, including symptoms and what can trigger attacks, the page provides a collection of resources for reading in depth about the specific types of porphyria. There is also information about current clinical trials related to porphyria.
