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Make a public comment today through this link:
These comments will help inform the federal government about the needs of patients with Acute Porphyria as they develop federal guidelines.
Patients, caregivers, and physicians can all comment. Share this link with others.
- Why you are writing
- Your diagnosis
- Description of your pain
- Unsafe drugs trigger an Acute Porphyria attack
- That opioids are the ONLY safe drug that helps to manage the severe pain of acute porphyria.
- Any personal details you would like to share
Don't wait - take 5 minutes and do this right away!


  1. My two sons have EPP. We do not live, unfortunately near a specialist. Not one time that they have had an outbreak has a doctor given them anything for pain! Once when one of my sons was burning so bad a nurse practioner suggested I give him percocet, so she wrote a whopping 6 pills. This helped alot but wasn't near enough. They only need something perhaps 2 or 3 times a year. Not on a regular basis. When they go to the doctor's office, clinic or emergency room they are treated like drug seekers! They have never been on legal or illegal drugs. It's a horrible shame this drug epidemic does not allow people with real pain some relief. As a mother, it kills me to see my children suffer. Someone PLEASE help!


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