Resources

• 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

• 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:

  • British Porphyria Association

  • United Porphyrias Association: Have an “Ask a Doctor” column and private Facebook group

  • American Porphyria Foundation: Very active private Facebook group

  • Australia Porphyria Association

• Merck Manual – Porphyria: A basic overview of porphyrias, for clinicians

• Young Caregivers Association (serves ages 5-25)

• Caregivers Alberta

• Family Caregivers of BC

• Caregivers Nova Scotia

• Regroupement des Aidants Naturels du Quebec (RANQ)

• The Ontario Caregiver Organization

• Family Caregiver Alliance (US)

• 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.

• 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

• Shadow jumpers comic book

• 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.

These wallet-sized cards are designed to help communicate vital medical information quickly and clearly in emergency situations—whether you're at the hospital, a walk-in clinic, or speaking with a new healthcare provider.

AHP Emergency Treatment Card

EPP Emergency Treatment Card

Fillable AHP Emergency Treatment Card

To request a card to be mailed to you, please complete this form.