Nom de l'organisation
Global Porphyria Advocacy Coalition (GPAC)
Adresse
136 Devonshire Rd
Durham City
DH1 2BL
Email
presiremovedent@gpac-porphyria.org
Site Internet
www.gpac-porphyria.org
Email
presiremovedent@gpac-porphyria.org
Objectifs et actions
GPAC officially became registered as a Charitable Incorporated Organisation (CIO) with the Charities Commission in May 2020.
GPAC is an umbrella organisation that provides a unified, collaborative voice for porphyria patients worldwide.
It connects, supports and engages national porphyria patient advocacy organisations, through the provision of an integrated international network, in an effort to gain awareness, access to diagnosis, management and treatment of the porphyrias.
GPAC, inclusively and equally, supports all of the porphyrias, promotes knowledge sharing among groups, and is transparent in its working practices. This approach supports patients/caregivers, physicians, researchers and regulatory bodies and ultimately, safeguards the interests of all individuals impacted by the porphyrias.
By November 2020, GPAC has over 23 Member countries and aims to provide a strong unified voice by working collaboratively with and to complement the existing national patient group’s actions.