For a large part of her life, Desiree Lyon’s rare disease, porphyria, was virtually untreatable by the medical world. As a result, she suffered much with uncontrollable attacks, the resulting intensive care stays, and even two bouts of paralysis. Her suffering went on for ten, from the age of 18 until her late 20s, when Dr. Jeff Aronin finally came on the scene. At that time Lyon was serving as the executive director of the American Porphyria Foundation, which she had co-founded. She was instrumental in instigating the partnership between APF and Aronin.
Prior to that time, an effective drug known as Panhematin had been developed. It had for a short time been distributed by Abbott Laboratories until the U.S. Food and Drug Administration said that in order to keep selling it, Abbott was required an entire plant upgrade. As a result, Abbott ceased its involvement with Panhematin altogether. As the representative of the afflicted, Lyon made call after call to the FDA to reconsider its ruling. She also contacted many other pharmaceutical companies to try to get them to take up the new drug and concede to the FDA’s demands. (prweb)
That is when Aronin and his company, Ovation Pharmaceuticals became involved. After that things went exceedingly well for the research and development of the drug. Today, Aronin is very clear that Lyon deserves the majority of the praise for the drug getting where it is right now. However, Aronin was very instrumental in making it this a reality.
Aronin has since that the beginning of the partnership sold Ovation and founded Paragon Biosciences. Panhematin has also changed distributors two times. Its current distributor, Recordati Rare Diseases Inc., purchased the rights to manufacture and distribute it in 2017. Porphyria is just one of a wide range of rare diseases RRD is committed to treating.