Heme Biosynthesis and the Porphyrias 2020:

Consensus Diagnoses, Variant Disorders, New & Emerging Therapies

October 11-13, 2020
Hyatt Regency Schaumburg Near Chicago O'Hare Airport

The Porphyrias Consortium Logo APF Logo

Patient Day

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SPECIAL PATIENT MEETING

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

October 11, 2020, 10am-3pm

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!

The Porphyrias Consortium and the American Porphyria Foundation invite you to attend a free patient day meeting on Sunday, June 28th, 10am-3pm (Registration and Coffee at 9:15am).

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 11, 2020

Concurrent Patient Session
Chairs: K. Wheeden, MBA & D. Lyon
9:15 am Registration and Coffee
10:00 am Welcome & Program Overview
K. Wheeden, American Porphyria Foundation
10:15 am APF and International Porphyria Advocacy
D. Lyon, American Porphyria Foundation
10:45 am Heme Biosynthesis & the Porphyrias 101
S. Keel, MD, University of Washington, Seattle
11:15 am Acute Hepatic Porphyrias: What Every Patient Should Know
K.E. Anderson, MD, University of Texas Medical Branch, Galveston; J-C Deybach, MD, PhD, Paris Diderot University, Paris, France
11:45 am Porphyria Cutanea Tarda: What Every Patient Should Know
K.E. Anderson, MD, University of Texas Medical Branch, Galveston; J.D. Phillips, PhD, University of Utah, Salt Lake City
12:05 pm Erythropoietic Protoporphyria: What Every Patient Should Know
M. Balwani, MD, MS, Icahn School of Medicine at Mount Sinai, New York; A. Dickey, MD, Massachusetts General Hospital, Boston
12:30 pm Lunch
1:30 pm Psychosocial Studies of the Porphyrias
H. Naik, PhD, Icahn School of Medicine at Mount Sinai, New York
2:00 pm Current and Emerging Therapies
J-C Deybach, MD, PhD, Paris Diderot University, Paris
2:30 pm Ask the Experts Panel
Moderated by M. Mazepa, MD, University of Minnesota
K.E. Anderson, MD; M. Balwani, MD, MS; J-C Deybach, MD, PhD; M. Kazamel, MD; E. Pischik, MD, PhD; E. Sardh, MD, PhD
3:00 pm Summation & Closing Remarks
K. Wheeden, MBA; D. Lyon, American Porphyria Foundation

 

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