Indo-US Rare Disease Conference

rare diseas indo us conference

Outcomes

  • Raise the awareness of rare diseases
  • Emphasize the important role of India in the global public health policy
  • Initiate basic research and orphan drug development collaborations

Although each rare disease affects a very small number of patients, with over 7,000 diseases meeting the criteria of “rare disease” and a population in excess of 7 billion, we are working for millions of people.  There are more than 3.5 million people in the US and more than 45,000 of Minnesotans with an Indian origin.

Register Now (Free)

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, raise awareness and emphasize the role India has in global health policy.The organizers call upon the Indian community in Minnesota and mid-western states to come forward to contribute in combating the rare diseases problem in the world and specifically in India. 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.

Breakfast and lunch will be served.

Organized by the Indian Organization for Rare Diseases and College of Pharmacy, in partnership with Consulate General of India, Chicago.

For further information: Ramaiah Muthyala muthy003@umn.edu or minnesota@i-ord.org

Agenda

8:00-8:30 a.m.
Registration & Breakfast – Meridan Foyer

8:30-8:35 a.m.
Opening Remarks
Clifford Steer, MD, Organizing Committee Chair, Professor of Medicine, Division of Gastroenterology Hepatology and Nutrition, Stem Cell Institute, Associate Dean for Faculty Affairs, Medical School, University of Minnesota

8:40-9:00 a.m.
Conference Introduction
Ramaiah Muthyala, PhD, FRSC President and CEO, Indian Organization for Rare Diseases; Research Associate Professor, Department of Experimental and Clinical Pharmacology University of Minnesota College of Pharmacy

9:05-9:25 a.m.
Inaugural Address
Ausaf Sayeed, PhD, Consul General of India, Chicago

9:30-9:55 a.m.
Keynote Address
Marilyn Speedie, PhD, Professor and Dean, University of Minnesota College of Pharmacy

10:00-10:30 a.m.
Rare Disease Policy Session
Session Chair: Tim Boyd, Associate Director for State Policy at NORD, MPH Candidate at George Washington University Milken Institute School of Public Health
• Senator John Hoffman, District 36, MN
• Representative Nick Zerwas, District 30A, MN
• Dr. Raj K. Manchanda, MD, Director General, Central Council for Research in Homoeopathy, Ministry of Health & Family Affairs, India

10:30-10:45 a.m.
Break – Meridan Foyer

10:45-11:25 a.m.
Rare Disease Patients Session
Session Chair: Judy Lysne, President of Lifeworks Inc.
• Niren Chaudhary, Parent of Immune deficiency disorder, President of KFC
• Lisan Hasnain, Leber’s Congenital Amarousis patient
• Clark Eid, PhD, Parent of Rett Syndrome patient, Director, St. Jude Children’s Research Hospital
• Brett Robertson, Parent of Late-infantile Metachromatic Leukodystrophy, (MLD) patient

11:25-12:15 p.m.
Global Health Policy Session
Session Chair: Connie Delaney, PhD, RN, FAAN, FACMI, Professor and Dean School of Nursing
• John Finnegan Jr. PhD, Professor and Dean, University of Minnesota School of Public Health
• Kevin Lindsey, JD, Commissioner, Department of Human Rights, State of Minnesota

12:15-1:15 p.m.
Research Session
Session Chair: James Cloyd, PharmD, Director, Center for Orphan Drug Research and Professor, Experimental and Clinical Pharmacology, University of Minnesota College of Pharmacy
• Harry Orr, Professor and Director, Department of Laboratory Medicine & Pathology,
Institute for Translational Neuroscience, University of Minnesota
• Dr. Paul Orchard, Director, Bone Marrow Transplant Institute, University of Minnesota
• Dr. Jayesh Sheth, Director, Institute of Human Genetics, Ahmedabad, India

1:15-2:15 p.m.
Lunch Buffet – Meridan Foyer
Lunch Lecture – Meridan Ballroom
Session Chair: Srirama Rao, MS, PhD, Professor Department of Veterinary and Biomedical Sciences, Professor of Medicine and Associate Dean for Research, College of Veterinary Medicine,
University of Minnesota
• Dustin Chandler, Interaction Advisory Group, former Alabama Police Officer

2:15-3:00 p.m.
Drug Development Session
Session Chair: Dr. Harry Orr, Professor and Director, Department of Laboratory Medicine & Pathology / Institute for Translational Neuroscience University of Minnesota
• Thomas “TC” Chung, PhD, Associate Director Office of Translation to Practice
• Dr. Jayesh Sheth, Director, Institute of Human Genetics, Ahmedabad, India
• Elsa Shapiro, PhD, President, Shapiro & Delaney LLC

3:00-3:15 p.m.
Break – Meridan Foyer

3:15-4:15 p.m.
Drug Development II Session
Session Chair: Clark Eid, PhD, Director, St. Jude Research Center
• James Cloyd, PharmD Director, Center for Orphan Drug Research, University of Minnesota
• Sandi Heibel, PhD, Director, Haffner associates

4:30 p.m.
Closing Remarks
Dr. Bruce Corrie, Associate Vice President for University Relations and International Programs Professor of Economics, Concordia University


Date/time:

Friday, November 18th, 2016
8:00am to 5:00pm

Location:

Commons Hotel – Minneapolis, MN

Guests have until October 18 to reserve a room at the conference rate of $146 (plus tax).  Call 800-822-6757 or 612-379-8888 and ask for the US - India Rare Disease Conference or book your accomodations online.

Organizing Committee:

Ramaiah Muthyala, Associate Professor, Department of Experimental and Clinical Pharmacology, College of Pharmacy, University of Minnesota

Steve Gawron, Chairman,  Indian Organization for Rare Diseases

Srirama Rao, Associate Dean, College of Veterinary Medicine, University of Minnesota

Babu Chimata, President, Indian Association of Minnesota

Bruce Corrie, Dean, Concordia college, St. Paul

Cliff Steer, Associate Dean, Medical School, University of Minnesota

D.B. Bhati, Consul (political, commerce and visa) Consulate General of India, Chicago

 

Scientific Advisory Board:

Dr. Marilyn Speedie – Dean, College of Pharmacy, University of Minnesota

Dr. John Finnegan – Dean, School of Public Health, University of Minnesota

Dr. Harry Orr – Director, Institute of Translational Neuroscience, University of Minnesota

Dr. Paul Orchard – Director, Bone Marrow Transplant Institute, University of Minnesota

Dr. Jakub Tolar, Director, Stem Cell Research Institute, University of Minnesota

Dr. Gunda Georg, Director, Institute for Therapeutics Discovery & Development, University of Minnesota

Dr. Chet Whitley – Lysosomal Diseases Network, University of Minnesota

Dr. Jim Cloyd - Director, Center for Orphan Drug Research, University of Minnesota

Dr. Elsa Shapiro, Founder, Shapiro & Delaney LLC–

Dr. Jayesh Sheth, Director, Institute for Human Genetics, Ahmadabad, India

Dr. I.C. Verma, Director, Center for Medical Genetics, New Delhi, India

Dr. K. Thangaraj, Principle Scientist, Center for Cellular and Molecular Biology, Hyderabad, India

 

Sponsors:

Academic Health Center, University of Minnesota

Center for Orphan Drug Research, University of Minnesota

Consulate General of India, Chicago

College of Pharmacy, University of Minnesota

Global Programs and Strategy Alliance, University of Minnesota

Institute of Translational Neuroscience, University of Minnesota

School of Nursing

School of Public Health, University of Minnesota

Confirmed Speakers:

Dr. Marilyn Speedie, Dean, College of Pharmacy
 
Dr. Ausaf Sayeed, Consul General of India, Chicago

Dr. Thomas D. Chung, Associate Director, Office of Translation to Practice, Mayo Clinic

Mr. Niren Chaudhary, parent of child with rare disease and advocate

Dr. Elsa Shapiro, Founder, Shapiro & Delaney LLC– Natural History & Clinical trials

Senator John Hoffman, District 36, MN

Representative from the National Organization for Rare Diseases

Representative from the National Ataxia Foundation Patient Support Group

Dr. John Finnegan, Dean, School of Public Health

Dr. Harry Orr, Director, Institute of Translational Neuroscience

Dr. Paul Orchard, Director, Bone Marrow Transplant Institute

Dr. Jakub Tolar, Director, Stem Cell Research Institute

Dr. Jim Cloyd, Director, Center for Orphan Drug Research