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Acute Porphyria Treatment Guidelines

Join porphyria experts Manisha Balwani, MD, MS of Mount Sinai and Hetanshi Naik, PhD of Stanford University for a conversation about the new acute porphyria guidelines and what patients and families should know.

Additional Resources:

Educational session only. Always confirm medication decisions with your healthcare team.

 

Check out past webinar recordings

Events
Acute Porphyria Treatment Guidelines
Jun 25
Acute Porphyria Treatment Guidelines

Join porphyria experts Dr. Manisha Balwani of Mount Sinai and Hetanshi Naik, for a conversation about the new acute porphyria guidelines and what patients and families should know.

Q&A: Nutrition and Porphyria
Mar 21
Q&A: Nutrition and Porphyria

Nutritionist Isabel Palazon is taking your questions on porphyria & nutrition!

Q&A: Acute Hepatic Porphyrias Neuropathy and Pain
Feb 7
Q&A: Acute Hepatic Porphyrias Neuropathy and Pain

Back by Popular Demand ! Dr. Mohammed Kazamel, Mayo Clinic porphyria expert and neurologist answers your questions live on Zoom.

Webinar: Drug Safety & Acute Hepatic Porphyrias
Jan 24
Webinar: Drug Safety & Acute Hepatic Porphyrias

Porphyria expert Dr. Bruce Wang (UCSF) and patient advocate Nicolas Frias walk through the basics of using the Drug Safety database so you can feel more confident when navigating medication decisions with AHP.

Mind, Body and Nerves: Daily Life with Acute Hepatic Porphyrias
Dec 10
Mind, Body and Nerves: Daily Life with Acute Hepatic Porphyrias

Join neurologist and porphyria expert Dr. Mohamed Kazamel for an informative webinar discussing the causes of chronic porphyria symptoms, which treatments are effective and strategies for managing symptoms day-to-day.

Liver Transplants & Porphyria
Nov 16
Liver Transplants & Porphyria

Join porphyria expert Dr. Amy Dickey to discuss when a transplant may be considered, what the process involves, potential risks and outcomes, and life after surgery. You’ll also hear directly from patients who have undergone transplantation as they share their personal experiences and perspectives. 

Molecules to Medicine: The Science of Porphyria
Jun 21
Molecules to Medicine: The Science of Porphyria

Join Porphyria Expert, John Phillips, PhD and fellow porphyria patient Lina Rebeiz as we delve into the science behind porphyria.

Treatment Options and Acute Hepatic Porphyrias
Mar 22
Treatment Options and Acute Hepatic Porphyrias

Recording Available! Join Dr. Sioban Keel for an informative webinar of treatment options for the acute hepatic porphyria (AIP, HCP and VP).

Reproductive Health and Acute Hepatic Porphyrias
Jan 11
Reproductive Health and Acute Hepatic Porphyrias

Recording Available! Dr. Rebecca Karp Leaf dives into all things reproductive health and porphyria!

Nutrition and Lifestyle in Porphyria- Recording Available
Jul 20
Nutrition and Lifestyle in Porphyria- Recording Available

Recording available! Nutritionist and AIP patient Isabel Palazon joined us to discuss lifestyle and nutrition strategies to help manage your porphyria!

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June 13

VP & HCP Connect UP
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June 27

UT Southwestern Porphyria Patient & Family Forum