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Resources for Patient and Families

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.

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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.

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Centers for Disease Control (CDC)

The Centers for Disease Control is the national health protection agency for the United States.

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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.

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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.

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Learn Genetics by the Genetic Science Learning Center

A learning tool powered by the University of Utah.

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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.

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Merck Manual of Diagnosis and Therapy

The Merck Manual aims to make the best current medical information accessible to professionals and patients around the world.

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National Institutes of Health (NIH)

The National Institutes of Health (NIH), a part of the US Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives.

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Online Mendelian Inheritance in Man

An online catalog of human genes and genetic disorders.

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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.

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University of Capetown Porphyria Center

Educational resources for patients and professionals hosted by the University of Cape Town Lennox Eales Porphyria Laboratory.

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UpToDate Porphyrias Overview

An online clinical resource tool for physicians and patients with educational materials to learn more about porphyrias.

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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.

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Alnylam Assist

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.

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Camp Discovery

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.

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HealthWell Foundation

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.

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MedicAlert Foundation

Emergency medical information service provides identification bracelets, and 24hr-accessible computerized medical files to medical personnel.

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Mercy Medical Airlift

Provides charitable air transportation for those in great need.

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National Organization of Rare Disorders (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

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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: 866-209-7604

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Solumbra sun protection clothing.

Sun Precautions Online

Sun protective clothing.

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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.

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The following are some references to help you understand the medical terminology that you might find when reading and researching the porphyrias.


MedLinePlus Genetics

Find consumer-friendly information about the effects of genetic variation on human health.

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Merriam-Webster Medical Dictionary

Search medical terms and abbreviations with the most up-to-date and comprehensive medical dictionary from the reference experts at Merriam-Webster.

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