patient resources

Patient Navigator



Did you know that UPA has a Patient Navigator can help you find a porphyria specialist, access testing and treatments, and get your porphyria questions answered?



Hi, I'm Erin Janiak, and I am thrilled to be here at the UPA as your Patient Navigator.

I originally worked as an RN in my home state of Pennsylvania. Now I look forward to putting that experience to work helping people navigate the complicated world of diagnosis, management, and treatment in the porphyrias. I’ll also connect patients to current research opportunities through the experts of the Porphyrias Consortium.

As a porphyria patient myself, I understand the need for support. Hopefully, my time working in healthcare and my personal experience can be an asset to the whole porphyria community.

Porphyria can be a very isolating disease. So, for me, it's wonderful and rewarding to connect with others. I like to say that, if we work together, we can change the world for everyone with porphyria! 


Contact Erin