Dr. Ramaiah Muthyala at the University of Minnesota has a passionate mission to help bring attention and resources to focus on rare diseases that kill millions every year, at least half of whom are children. According to the National Institute of health there are 7,000 rare diseases, affecting more than 25 million Americans and their families. With global attention given to the spread of Zika, researchers hope attention and resources will also flow to a combat and understand a wide range of other rare diseases. Here are some more facts from the National Institute of Health: A rare disease is one that impacts fewer than 200.000 people
- Rare diseases may involve chronic illness, disability, and often premature death.
- Rare diseases are complex, and often with inadequate or no treatment, thereby representing a disproportionate share of health care spending.
- Patients with rare diseases are frequently misdiagnosed or are undiagnosed.
- Few drug companies conduct research into rare diseases since it is difficult to recover the costs of developing treatments for small, geographically dispersed populations.
- To advance medical research on rare diseases, a research network facilitates collaboration, enrollment in studies and trials, and sharing of data.
In order to bring better focus, policy and resources to this issue, Dr. Muthyala has partnered with the Consul General of India, Chicago and various other researchers and organizations to offer an Indo-US conference on rare diseases in Minneapolis on November 18, 2016.
This one-day conference will bring together patients, care-givers, practitioners, researchers and students in a first of its kind conference held in Minneapolis to foster collaboration and raise awareness with an India focus.
The National Organization of Rare Disorders has a state by state ranking on the state infrastructure to combat rare diseases. Fortunately Minnesota fares well in that ranking.
Rare diseases are not specific to any particular country; they are global issues. Although the conference is organized by patient support groups from Indian origin, and the Indian consulate, this conference invites people of all nationalities and is open to the public.
Self-Accreditation materials will be available for MN pharmacists.
Information about the conference and speakers can be found here.