The Global Porphyria Advocacy Coalition (GPAC) is an umbrella organisation for national porphyria patient advocacy organisations, 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 Organisation (CIO) in the United Kingdom.
Who We Are
TAKE ME TO:
Meet our executive
-
![]()
Sue Burrell - President
-
![]()
Kika Shabot - Acting Vice-President
-
![]()
Derry Wilcox - Treasurer
-
![]()
Freya Jackson - Admin & Comms Assistant
-
![]()
Sean Hegarty - Past Vice-President
-
![]()
Joaquín Montoto - Past Secretary
Meet Our Advisory Council
Become a Gpac member
The Global Porphyria Advocacy Coalition is made up of national patient organisations 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 organisation, please contact us at contact@gpac-porphyria.org 📧
joining forms
Below you’ll find our GPAC joining form, available in both English and Spanish. We welcome organisations from around the world who are passionate about advancing porphyria advocacy, awareness and research.
Please select your preferred language to get started:
our members
Austrian EPP
Israel
Polska Grupa Chorych na Porfirę