Thinking Porphyria, Working Together

International Congress on
Porphyrins and Porphyrias

4-7 September 2022
Sofia, Bulgaria

Patient day

Kristen Wheeden
Kristen Wheeden

Kristen Wheeden

Kristen serves as President of the United Porphyrias Association (UPA).. Supported by a dedicated Scientific Advisory Board and guided by a motivated team of patients and advocates, UPA is focused on advancing awareness, research, and therapies.

She is also a member of the Porphyrias Consortium Steering Committee and is on the Board of Directors of the American Porphyrias Expert Collaborative (APEX), Shadow Jumpers Inc, and the NIH Cures Acceleration Network. Her regular column, Hope in Action, is published by BioNews.

Her youngest of three sons lives with erythropoietic protoporphyria (EPP). Since his diagnosis in 2009, he has motivated her to lead and support porphyria patients and their families.

MBA – The George Washington University
MPH Certification – University of Maryland

Katerina Bozhinovska

North Macedonia

Cornelia Dechant

Austria

Sue Burrell
Sue Burrell

Sue Burrell

SUE BURRELL

GPAC President and Strategic Lead of Engagement and Advocacy at the BPA

Sue is an AIP patient from the UK. She has been actively involved in patient advocacy for all of the porphyrias for over 14 years. In Sept 2019 (ICPP/Milan), Sue became the elected President of the newly formed Global Porphyria Advocacy Coalition (GPAC). This umbrella patient organisation works collaboratively to strengthen and support porphyria patient groups from across the world. Sue also works for the British Porphyria Association (BPA) where she takes a leading role in engagement, advocacy and strategic planning for the charity.

Louise McGivern

Desiree Lyon
Desiree Lyon

Desiree Lyon

Desiree Lyon co-founded and has served as Director of the American Porphyria Foundation (APF) for forty years. The APF boasts 16,400 members in over 100 countries. Her first action was to help secure approval of the Orphan Drug Act which led to Panhematin as the first Orphan Drug and Desiree’s receipt of the coveted FDA Hero Award and NORD Rare Impact Award, etc.   

Under her leadership, the APF facilitated all clinical research, the approval of three treatments, and over 200+ television and print media.  Desiree’s book, Porphyria, A Lyon’s Share of Trouble, continues to be marketed. Desiree graduated from Auburn University and holds an Honorary Doctorate.  

Amy Dickey
Amy Dickey

Amy Dickey

Dr. Amy Dickey is a physician at Massachusetts General Hospital (MGH) and Instructor of Medicine at Harvard Medical School (HMS) engaged in clinical and translational porphyria research. Having a diagnosis of erythropoietic protoporphyria (EPP) herself, she is the co-founder and co-director of the MGH Porphyria Center. Amy is carrying out investigations to improve clinical trial endpoints in EPP and to better understand the reasons for differences in light sensitivity between EPP patients. She is also leading a Porphyrias Consortium study that is investigates the effect of oral cimetidine for the protoporphyrias.

Jasmin Barman
Jasmin Barman

Jasmin Barman

Jasmin Barman-Aksözen, PhD

Jasmin is a molecular biologist and a patient advocate suffering from erythropoietic protoporphyria (EPP). In 2007, she joined the porphyria research group of Elisabeth Minder and Xiaoye Schneider-Yin at the Municipal Hospital Zürich and in 2014 obtained her PhD from the University of Zurich. Her main scientific interest is the iron metabolism in EPP, the identification of new drug targets and the pathophysiology of hepatocellular carcinoma in the acute hepatic porphyrias. In 2021, Jasmin was appointed Associate Professor at the University of Zurich. She is the Vice President of the International Porphyria Patient Network.

Danny de Roode

Netherlands

Kika Shabot

Mexico

 

Liz Gill
Liz Gill

Liz Gill

Liz is the Strategic Lead for Operations and Advocacy at the British Porphyria Association.

An acute porphyria patient, Liz has engaged in patient advocacy for around 20 years, supporting porphyria patients and their families, collaborating with medical professionals, working with global organisations, and being heavily involved with the new drug approval process in the UK.

Liz is currently the patient representative on the Executive Board of the European Porphyria Network (Epnet) and is a member of two Epnet working groups.

Tina Todorova

Bulgaria

Antony Fearn

UK

Francesca Granata
Francesca Granata

Francesca Granata

I have a master of sciences degree in Molecular Biology of the Cell. I have been working on Porphyria since 2009 and published several peer-reviewed articles about this topic. I have always been interested in the drug access process, and this is the reason why I became and I'm still active as a scientific consultant for the International Porphyria Patient Network (IPPN). Moreover, in 2021 I participated as a speaker at TEDx talk, in order to disseminate my life experience with erythropoietic protoporphyria.

ICPP 2022

ICPP 2022

Thinking Porphyria, Working Together

International Congress on
Porphyrins and Porphyrias

4-7 September 2022
Sofia, Bulgaria

ICPP 2022

ICPP 2022

Thinking Porphyria, Working Together

International Congress on
Porphyrins and Porphyrias

4-7 September 2022
Sofia, Bulgaria

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