Extending the College’s Leadership in Orphan Drugs Across the Globe
Research Associate Professor Ramaiah Muthyala is the founder, president and CEO of the Indian Organization for Rare Diseases (IORD) — an umbrella organization representing all rare diseases and patients in India. Its mission is to raise the awareness of rare diseases in India, advocate for public policy and promote orphan drug development.
When Muthyala first came to the University, he joined the Center for Drug Design as senior associate director. After five years, he moved to the Center for Orphan Drug Research. While the orphan drug industry was progressing in the United States, the pharma industry for orphan drugs was nonexistent in many countries. As awareness spread, he launched a personal mission to raise awareness in India and other developing countries.
“In India, parents are often helpless when they have a child with a rare disease; the patient does not have a voice like patients do in the United States,” said Muthyala. “India supplies 25 percent of the world’s pharmaceuticals; however, there are no incentives for the pharmaceutical industry to develop drugs for rare diseases.”
In 2016, Muthyala organized the Indo-U.S. Rare Diseases Conference held on the University of Minnesota campus to increase awareness and encourage drug development collaborations. Minnesota Governor Mark Dayton proclaimed Nov. 16 of that year as Rare Disease Awareness Day.
“What Ramaiah has done is with the encouragement of the college, but he’s done this on his own through his leadership and commitment,” said Dean Emeritus Marilyn Speedie. “He has been remarkably successful in India by bringing attention to rare diseases and his work has extended to a global awareness with the United Nations, the World Health Organization through Rare Diseases International and UN NGO committee for Rare Diseases and beyond.”