Who We Are
The Global Porphyria Advocacy Coalition (GPAC) is an umbrella organization for national porphyria patient advocacy organizations, representing all types of porphyria.
We work together to increase awareness and gain access to diagnosis, management and treatment of the porphyrias for all individuals impacted by porphyria.
GPAC is a Charitable Incorporated Organization (CIO) in the United Kingdom.
Meet our executive
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Sue Burrell- President
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Kika Shabot- Acting Vice-President
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Sean Hegarty- Past Vice President
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Derry Wilcox- Treasurer
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Joaquín Montoto- Past Secretary
Become a Gpac member
The Global Porphyria Advocacy Coalition is made up of national patient organizations who meet biennially at the International Congress of Porphyrins and Porphyrias.
Members connect regularly online to work on awareness and advocacy initiatives.
For more information on becoming a member organization, please contact us at contact@gpac-porphyria.org.