Resources
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Porphyria Drugs: Checks three different databases for safety information, available as an app
NAPOS: Drug safety database for Norway, Sweden and Great Britain
APF Safe/Unsafe Drug Database: Run by the American Association for Porphyria
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International Porphyria Network: A network of doctors, laboratories and researchers involved in the care of porphyria patients. Their website has many helpful resources for doctors and for patients.
Global Porphyria Advocacy Coalition (GPAC): An international coalition of patient groups working together to support people living with porphyria. Other members include:
United Porphyrias Association: Have an “Ask a Doctor” column and private Facebook group
American Porphyria Foundation: Very active private Facebook group
Merck Manual – Porphyria: A basic overview of porphyrias, for clinicians
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Is my prescription covered?
Helpful tool that asks you a series of questions to determine if your prescription will be covered. Created by the Canadian Skin Patient Alliance.
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Rare Connect: hosts online communities for rare diseases, including porphyria
Canadian Organization for Rare Disorders: Advocates for improving access to treatments for rare diseases in Canada, have bursaries for patients to attend conferences
National Organization for Rare Disorders (US): Resources on advocating for yourself, understanding treatments, organize rare disease day (international)
Eurodis (EU): Organizes Rare Disease Day (international)
Global Genes: Resources on genetics, financial advocacy
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Camp Sundown: A summer camp for kids who need to stay out of the sun. We provide bursaries to attend- become a member to learn more.