The UPA is always glad to support you and connect you to accurate and reliable information on the porphyrias. However, you may have a porphyria organization located in your country. For Porphyria support across the globe, please contact your member country leaders located at the Global Porphyrias Advocacy Coalition (GPAC) website. If it is listed on the GPAC site – it is a reliable organization.
The Global Porphyria Advocacy Coalition (GPAC) operates as an umbrella organization for national porphyria patient advocacy organizations, representing all types of porphyria. This organization will establish and maintain a global network that seeks to support all individuals impacted by porphyria and to safeguard their interests.
The porphyrias are a group of rare and ultra-rare diseases that impact individuals in every single country worldwide. Many countries have patient advocacy groups that have organized to promote research, awareness, education, and support of in-country patients. These groups foster access to diagnosis, management and treatment for patients impacted by porphyria. The role of national organizations is paramount for the advancement of the interests of porphyria patients, particularly given the complexities and variables between countries.
There are many countries that do not have support organizations to provide access to these basic needs. While there are many porphyria organizations throughout the world, there is no central source for information, which results in a significant discrepancy of resources and diminished continuity in the characterization of disease. The result is a lack of consistency and unity when engaging in key areas of awareness and advocacy.
The GPAC brings together national organizations, when necessary, offers in-country support when requested, leverages international advocacy expertise, and has the opportunity to link an international physician network. The GPAC will support and complement national organizations. This effort will provide a strong unified voice representing the interests of all porphyria patients worldwide.