If you have Acute type Porphyria and need additional resources for your Dr check these out below:
Resources for your patients
Encourage your patient to learn as much as possible about AIP by visiting these websites:
- The American Porphyria Foundation was founded in 1982 to educate doctors and the general public, raise funds for research, and advocate for better policy and patient care.
- Genetic and Rare Diseases Information Center (GARD) of the National Institutes of Health is a resource for patients, their families, and others with an interest in genetic conditions and rare diseases.
- The National Organization for Rare Disorders (NORD) was founded in 1983 as a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases.
- The Merck Manual offers an informative page about AIP and its signs and symptoms.
- The U.S. National Library of Medicine is the world’s largest medical library. Its porphyria page draws from information from the National Institutes of Health and other sources.
“Remember…..Research is the key to your cure!”