Heme Biosynthesis and the Porphyrias 2021:

Consensus Diagnoses, Variant Disorders, New & Emerging Therapies

October 15-17, 2021
Hyatt Regency Schaumburg Near Chicago O'Hare Airport

The Porphyrias Consortium Logo APF Logo

Patient Day

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SPECIAL PATIENT MEETING

Sunday, October 17, 2021, 10am-3pm

Schaumburg Hyatt Regency
Schaumburg, IL, near Chicago O’Hare Airport

Please join us for this opportunity to learn about the porphyrias and to meet other members of your community! Caregivers, family and friends are welcome! This Patient Session will be open to BOTH in-person and virtual attendees.

The Porphyrias Consortium and the American Porphyria Foundation invite you to attend a free patient day meeting on Sunday, October 17, 10am – 3pm (Registration and Coffee at 9:15am). Patients and caregivers are also welcome to register for the entire scientific conference at the Patient/Patient Advocate rate.

The Erythropoietic and the Acute Hepatic Porphyrias will be discussed by international porphyria experts. A special Ask the Experts session will be moderated by a panel of expert physicians!

We look forward to seeing you in Schaumburg!

Click Here to Register

Click here for hotel reservation information.

The agenda for Patient Day is below:

Sunday October 17, 2021

Concurrent Patient Session
Chairs: Cynthia Levy, MD and Charles Parker, MD
10:00 am Welcome and American Porphyria Foundation (APF) Update
Kristen Wheeden, American Porphyria Foundation, Executive Director
10:05 am APF Goes Global
Desiree Lyon, American Porphyria Foundation, Global Director
10:15 am

Overview and What’s New in the Porphyrias
Diagnosis, management, and treatment

Guidelines and Long-Term Follow-Up for all Porphyrias
Manisha Balwani, MD, MS, Icahn School of Medicine at Mount Sinai, NYC

AHP
Michael Badminton, MB, ChB, PhD, Cardiff University, Cardiff

PCT
Karl Anderson, MD, Karl Anderson, University of Texas Medical Branch, Galveston

EPP/XLP
Manisha Balwani, MD, MS, Icahn School of Medicine at Mount Sinai, NYC

CEP
Angelika Erwin, MD, PhD, Cleveland Clinic, Cleveland

11:30 am Emerging Treatments in the Porphyrias
Discussion about new and potential treatments in the porphyrias
Jean-Charles Deybach, MD, PhD, Paris Diderof University, Paris, France
12:00 pm Research Is the Key to Your Cure!
Current research and how to get involved
Karli Hedstrom, MPH, Icahn School of Medicine at Mount Sinai, NYC
12:15 pm Pain in the Porphyrias
Explain and discuss pain in the Acute (Hepatic) and Cutaneous (Erythropoietic) Porphyrias
Elena Pischik, MD, PhD, Consultative and Diagnostic Center with Polyclinics, St. Petersburg
Mohamed Kazamel, MD, University of Alabama, Birmingham
12:45 pm Lunch
Chairs: Sean Rudnick, MD and Charles Parker, MD
1:15 pm Quality of Life and Psychosocial Issues

Issues and impact beyond the physical symptoms
Hetanshi Naik, PhD, Icahn School of Medicine at Mount Sinai, NYC
1:45 pm Cannabis Use and Alternative Medicines
Results of a patient survey
Hetanshi Naik, PhD, Icahn School of Medicine at Mount Sinai, NYC
2:00 pm Ask the Porphyria Experts Panel
Bruce Wang, Sioban Keel, Cynthia Levy, and Brendan McGuire
2:45 pm Get Involved – what you can do as a rare disease patient
Highlights of ways to be involved in education, awareness, advocacy and support programs
Kristen Wheeden, Executive Director, APF
3:00 pm Adjourn

Please contact the American Porphyria Foundation with any questions at info@porphyriafoundation.org or 1-866-APF-3635.