In the 40 years since the Orphan Drug Act was legislated in the USA, there is a growing understanding of the importance of rare diseases that affect over 30 million Americans. While the situation in Europe is similar, no such awareness exists in many parts of the world such as India which is home to over a quarter of the world’s population. It is time to change that, for the 1.5 billion people in India, and the 8 billion people across the world.
The Bridging RARE Summit 2023 brings together key leaders representing all stakeholders of rare diseases from across the world with a specific focus on the US, and the Indian subcontinent.
Cross Border Patient Engagement
Care Pathways: Screening, Diagnosis, & Treatment options
Digitization of Rare Diseases - Registries, Emerging Markets
DEI & Globalization for Orphan Drugs
Orphan Drug Clinical Trials
Regulatory pathways for Orphan Drugs
Live and in-person at Van Metre Hall, George Mason University
Registrations Details
Indo US Bridging RARE Summit Gala Dinner & Award Ceremony
Welcome Note
Amy Adams, PhD Institute for Biohealth Innovation, George Mason University
John Newby, JD Virginia Bio
Why IndoUSrare? Why Now? Why are we here?
Harsha Rajasimha, MS, PhD Indo US Organization for Rare
IndoUSrare Programs and Impact
Nisha Venugopal, PhD Indo US Organization for Rare Diseases
Patient/Caregiver Keynote (US)
Naveen Baweja, MBA and Priyanka Kakkar Cure ADSSL1
Patient/Caregiver Keynote (India)
Gautam Dongre National Alliance of Sickle Cell Organizations (NASCO)
Panel Discussion
Samir Sethi Indian Rett Syndrome Foundation (IRSF)
Suyog Sathe International Gaucher Alliance & Lysosomal Storage Diseases Support Society India (LSDSS-India)
Dorothea Lantz, MPA Prader Willi Syndrome Association
Alison Bones, BBA T.E.A.M. for Travis
Plenary Keynote
K Thangaraj, PhD Centre for DNA Fingerprinting and Diagnostics (CDFD)
Panel Discussion
Maria G. Della Rocca, MS, PMP Global Genes
Teresa Ginger Davis Sickle Cell/Thalassemia Patients Network
Bonnie Schneider IGA Nephropathy Foundation
Plenary Keynote
Madhulika Kabra, MD All India Institute of Medical Sciences, New Delhi (AIIMS-Delhi)
Harsh Sheth, PhD FRIGE - Institute of Human Genetics
Panel Discussion
Ashish Gupta, MD University of Minnesota
Tiina Urv, MD National Center for Advancing Translational Sciences (NCATS, NIH)
Tamanna Roshan Lal, MD Uncommon Cures
Plenary Keynote
Subha Madhavan, PhD Pfizer, Inc.
Panel Discussion
Sophia Zilber Cure Mito
Paul Mehta, MD Centers for Disease Control and Prevention (CDC)
Dr. Amlin Shukla Indian Council of Medical Research (ICMR)
Live Music Performance: Sasanka Sreedevi Naresh Briar Woods High School
Parent/Caregiver of a Rare Disease: Ms. Urvi Bham
Diagnostic Odyssey in the DMV area: Ms. Geetha Bhat
A Short Video About Indo US RARE
Importance of legislative advocacy: Krystle Veda Kaul, PMP Candidate for Congress, VA District 10
Inaugural Keynote: Vikram Karnani, MBA Horizon Therapeutics
Abbey Meyers Khushi Bridging RARE Awards Ceremony:
Honoree 1: Dr. Ishwar Chander Verma Sir Ganga Ram Hospital
Honoree 2: Dr William Gahl, Undiagnosed Disease Network International (UDNI)
Congratulatory Message: Abbey S. Meyers, PhD Founder, NORD
Letter of Recognition and Support from Congressman Gerald Connolly: Sreelakshmi Vayal Veettil Intern
A tribute to Indo US RARE
A dance production: Dr. Mani and Anagha Sreenivas Nupura Naadam Dance Academy
Entertainment and Gala Dinner
Sasanka Sreedevi NareshBriar Woods High School
Ms. Urvi Bham
Ms. Geetha Bhat
Krystle Veda Kaul, PMPCandidate for Congress, VA District 10
Vikram Karnani, MBA Horizon Therapeutics
Abbey S. Meyers, PhD Founder, NORD
Sreelakshmi Vayal VeettilIntern
Dr. Mani and Anagha SreenivasNupura Naadam Dance Academy
Donor and Volunteer Recognition
Narayanan Govindarajan, MS IndoUSrare
Ramya T. Karur, MScIndoUSrare
Juhi Naithani, MBAIndoUSrare and bGlobal Consulting
Recap of Day 1
Reena Kartha, Ph.D
Keynote Address (US)
Peter Marks, MD, PhD US Food and Drug Administration (US FDA)
Keynote Address (India)
Dr. L SwasticharanDirectorate General of Health Services, India
Rare Disease Revolution: Bridging Technology, Equity, and Therapies
Isaac Rodriguez-Chavez, PhD4Biosolutions Consulting
What are the pathways for rare disease drugs in India?
Bhaskar Sonowal, MBBS, MBA HED Healthcare
Gene Therapies
Sukumar Nagendran, MDTAYSHA Therapeutics
Global product development: Gaps and considerations
Sumati Nambiar, MD, MPH
Panel Discussion
Moke Sharma, MBABristol Myers Squibb (BMS)
Rusty Clayton, DO Larimar Therapeutics
Pankaj Bhargava, MD AshiBio
Harsha Rajasimha, PhD Jeeva Clinical Trials
Panel Discussion
Meredith Manning, MBA PharmaEssentia Corp
Mike Blum, MBA, Homology Medicines
Matthew Pauls, MBA, JD, Savara,Inc.
Neil Kumar, PhD BridgeBio
Plenary Keynote
Prof. Sheffali Gulati, MD, FRCPCH (UK), FAMS, FIAP, FIMSA All India Institute of Medical Sciences (AIIMS), New Delhi
India’s population history enables discovery and development of therapies for inherited disorders
Sekar Seshagiri, PhD MedGenome Inc., and AntlerA Therapeutics
Panel Discussion
Dean Suhr, BS MLD Foundation
Mohua Chakraborty Choudhury, PhD Johns Hopkins University
Theresa Strong, PhD Foundation for Prader-Willi Research (FPWR)
Avni Santani, PhD OpusGenomics
Volunteer Recognition
Nisha Venugopal, PhD Indo US Organization for Rare Diseases
This is an excellent opportunity for you to showcase your work and expand your collaborative network by interacting with rare disease stakeholders including our eminent speakers and panelists from US and India.
The Indo US Bridging RARE Summit Souvenir will be distributed to all attendees. It showcases speaker profiles, the meeting agenda and special sessions, Sponsors, leadership messages, photographs, Sponsor and exhibitor information, and much more.
The souvenir book will be designed to have a final size of 8.5”x 11” which will include a ½” border all around. Please follow the below-listed specifications while submitting your ad.
Files that do not meet these requirements will not be accepted. Quality of printing will depend upon the sharpness of the images used.
LAST DATE FOR SUBMISSIONS: 10 October 2023
Hotels near the event venue
4610 N. Fairfax Dr, Arlington, VA 22203
To avail of the Summit special discounted rate, please make your booking using this link
659 North Quincy Street, Arlington, Virginia, 22203
801 North Glebe Road, Arlington, Virginia, USA, 22203
Disclaimer:
*For information only.
IndoUSrare is not affiliated with and does not endorse any of these
funding sources. We also do not provide any travel allowances.
This program assists rare disease researchers and professional students with an interest in the rare disease field with travel expenses, and provides opportunities for these individuals to be able to connect in person with the rare disease community, to foster collaboration and communication.
Indo US Bridging RARE Summit 2023 is live and in-person at the Van Metre Hall, George Mason University, 3351 Fairfax Dr, Arlington, VA 22201, United States
