Get your porphyria questions answered!

Dr. Bruce Wang, Porphyria Expert from UCSF, took your questions LIVE on our Porphyria Together Facebook group in honor of Global Porphyria Day 2026.

Join the next live stream! Join the Porphyria Together Facebook Group

Time Stamps:

• 4:43- One Thing Dr. Wang wants you to know about porphyria

• 8:30- Peripheral swelling (Acute- AIP, HCP, VP, ADP)

• 10:23- Light safety for laser hair and UV therapy (VP, HCP, EPP/XLP, PCT, CEP)

• 14:37- Overlap with other conditions (Acute)

• 18:18- Having attack symptoms while on givosiran (Acute)

• 24:00- Importance of getting a baseline of ALA/PBG (Acute)

• 27:50- Personalizing treatments on givosiran and hemin (Acute)

• 30:36- Headaches during attacks (Acute)

• 34:10- Need for multi-disciplinary care teams

• 36:08- Symptoms progression during attack (Acute)

• 44:00- Access to emergency hotline/expert network

• 47:52- Which tests to order if porphyria is suspected

• 51:20- HRT Safety when porphyria is inactive (Acute)