In the article, I discuss the tax credit for rare disease drug development that the House voted to eliminate as part of the tax bill last Thursday. For me it’s personal, as I have an ultra-rare genetic skin condition called EPP porphyria, which causes painful photosensitivity. Patients with EPP are currently waiting for an effective therapy to be available in America. Please like or share this article to advocate for the orphan drug tax credit and to raise awareness about EPP.
Many of you who know me might be surprised about this diagnosis, since I’ve gone to great lengths to keep it a secret most of my life. Recently, I’ve recognized that this has been a bad strategy, especially since my own physician friends and co-workers could be the ones missing a diagnosis for someone else. Hence, I’m now sharing my story. Feel free to help me spread the word about EPP.