Statement from the American Porphyria Expert Collaborative

Biochemical Tests Essential for Diagnosis and Monitoring of Porphyrias

The American Porphyria Expert Collaborative (APEX) has issued a statement advocating for consistent and accessible porphyria testing to be available nationwide.

Porphyria biochemical testing in the U.S. varies across different laboratories making porphyria diagnosis and treatment more challenging, and creating disparities in access for different regions.

The experts provide a list of key porphyria tests they recommend be made available across laboratories to ensure accurate diagnosis, better treatment monitoring, and consistent care.

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The American Porphyrias Expert Collaborative facilitates best practices in the diagnosis, management and treatment of the eight major porphyrias and their variants by facilitating, and coordinating expert activities in the United States and by developing collaborative arrangements with expert porphyria groups worldwide.