Resources for Patient and Families h1 >
The experts of The Porphyrias Consortium promote treating your health with the respect it deserves, and recommends looking to reliable sources for your medical information. Websites that are backed by scientific research are good places to start. Some suggestions include:
Annals of Internal Medicine
Annals of Internal Medicine: Clinical Cases is a peer-reviewed, open access journal that publishes case reports, case series, medical image/video cases and clinical reflections across the spectrum of medicine published in partnership between the American College of Physicians and the American Heart Association.Learn More
AHP drug database
The Nordic Drug Database for Acute Porphyria is a web-based searchable resource specifically designed for use by health care professionals in prescribing drugs and counselling patients who are carriers of an acute porphyria. The Nordic drug database is collaborating with EPNET, a project that aims to assemble a functional network of specialist porphyria centres in Europe.Learn More
Criver’s Online Metabolic and Molecular Bases of Inherited Disease
Based on the book, Metabolic and Molecular Bases of Inherited Disease, first published in 1960, Scriver's OMMBID from McGraw-Hill Medical is an online resource delivering comprehensive coverage of the genes and genetic mechanisms underlying human disease states.Learn More
European Porphyria Initiative
EPNET, the European Porphyria Network, is a non-profit scientific association based in Bergen, Norway aiming to promote fundamental and clinical research in the field of porphyrias, improve knowledge of the porphyrias and more.Learn More
MedlinePlus is a service of the National Library of Medicine (NLM), which is part of the National Institutes of Health (NIH), presenting trusted health and wellness information that easy to understand, free of advertising, and available in both English and Spanish.Learn More
PubMed is a free resource supporting the search and retrieval of biomedical and life sciences literature from a database containing more than 33 million citations and abstracts of biomedical literature.Learn More
US Food & Drug Administration
The Food and Drug Administration protects and advances public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices, helping to speed innovations that make medical products more effective, safer, and more affordable, and disseminating accurate, science-based information to the public.Learn More
Alnylam Assist® offers personalized, comprehensive support for patients throughout treatment with GIVLAARI™ (givosiran). For questions about navigating insurance and getting started on treatment or to learn more, visit Alnylam Assist® website or call 1-833-256-2748, Monday-Friday, 8 AM-6 PM ET.Learn More
Fun for kids with CEP, EPP, and HEP—sponsored every year by the American Academy of Dermatology. The experience is geared towards young people with chronic skin conditions, who enjoy a week of fishing, boating, swimming, water skiing, arts and crafts, and just plain fun.Learn More
Non-profit organization established in 2003 that is committed to addressing the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments.Learn More
Recordati Patient Support Program
Free service available to patients, caregivers, medical billing staff, healthcare providers, and others who have questions about insurance coverage and reimbursement-related issues.
Phone: 866-209-7604Learn More
United States Department of Labor Office of Disability Employment Policy
Social Security Disability Benefits
Helpful resources on topics such as how to apply for disability benefits, find a job, get health care or pay for accessible housing. You can also find organizations in your community to help you get the support you need.
The following are some references to help you understand the medical terminology that you might find when reading and researching the porphyrias.