For the First Time, People Living with Congenital Erythropoietic Porphyria Come Together in One Global Space

We're introducing our new CEP Patient Group, led by Fide Mirón, President of the Spanish Porphyria Association (AEP).

Living with Congenital Erythropoietic Porphyria (CEP) — one of the rarest and most severe forms of porphyria — has meant, for many families, walking a lonely path. The condition is so rare that many people living with it have never had the chance to meet anyone else in the world who shares their exact experience.

That is why we are thrilled to announce the launch of our new CEP Patient Group: the first space of its kind designed specifically to bring together, on a global scale, people and families affected by this condition.

We created this group with a concrete roadmap, centered on the real needs of the CEP community:

• Community and mutual support. A gathering place to connect with others who share the same experience, to listen to one another and learn together.

• Medical knowledge and updates. Access to clear, reliable, first-hand information on the latest scientific breakthroughs and treatments.

• Wellbeing and resources. Tools and guides, provided through GPAC, aimed at improving quality of life for people living with CEP and those who support them.

• Real accessibility. Every meeting will offer real-time translation into up to 60 languages, so language is never a barrier to taking part.

The group is led by Fide Mirón, President of the Spanish Porphyria Association (AEP) and now Director of the CEP Group for GPAC. She is joined by our team supporting this community from its very first steps.

"Together, we can raise our voices, make ourselves visible, and open doors that would be very difficult to reach on our own", says Fide Mirón in the invitation letter we sent to the community.

Living with CEP and Want to Join?

If you or someone in your family lives with CEP and would like to join this group reach out to us at meme.carranca@gpac-porphyria.org.

At GPAC, we believe no one should have to walk this path alone!