APPENDIX
Laboratories that measure porphyrin level (serum, plasma, erythrocytes, urine and feces): USA
●ARUP Laboratories (www.arupconsult.com)
●Mayo Medical Laboratories (www.mayocliniclabs.com) – also do enzyme assays and genetic analyses
●University of Texas Medical Branch – Porphyria Center (https:// www.utmb.edu/internalmedicine/divisions/gastroenterology/ research/research-programs/porphyria-program/porphyria-center) Europe
●Porphyrin Laboratory, Free University of Brussels (frederic.cotton@ lhub-ulb.be)
●Porphyria Research Centre Finland (raili.kauppinen@hus.fi)
●French Porphyria Center Paris (www.porphyrie.net)
●French Porphyria Center Bordeaux (emmanuel.richard@ubordeaux.fr)
●European Porphyria Specialist Center, Düsseldorf (porphyriaspecialistcenter@med.uni-duesseldorf.de)
●German Competence Center for Porphyrias Karlsruhe (www. porphyrie.de)
●Porphyrin Specialist Center Dublin (vcrowley@stjames.ie)
●Porphyria Center Milano (maria.cappellini@unimi.it)
●Dutch Porphyria Center Rotterdam (stofwissselingsziekten@ erasmusmc.nl)
●Norwegian Porphyria Center (NAPOS) (porfyri@helse-bergen.no)
●Porphyria Center Stockholm (porfyricentrum.karolinska@sll.se)
●Porphyria Center Barcelona (JTO@clinic.ub.es) (porphyria.eu/ content/spain-barcelona)
●Porphyria Center Madrid (ddavola@unav.es)
●Swiss Porphyria Center Zürich (Xiaoye.schneider@triemli.stzh.ch) United Kingdom
●Porphyria Center England, London (david.rees2@nhs.net; p.stein@ nhs.net)
●Porphyria Center Wales, Cardiff (Mike.badminton@wales.nhs.uk)
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thereby reducing circulating levels of neurotoxic metabolites. The most common side effects are injection site reactions and nausea, and both liver function tests and serum creatinine need to be monitored. Givosiran can lead to severe hyperhomocysteinemia, probably due to inhibition of the heme-dependent enzyme cystathionine-β-synthase which is important for homocysteine metabolism, with subsequent protein-N-homocysteinylation.