Event has finished,
See you next year!
Banner image of the Indo-US Bridging RARE Summit 2023 on October 29 – 30, 2023. The mobile-compatible image of the Indo-US Bridging RARE Summit 2023 on October 29 – 30, 2023.

Indo US Bridging RARE Summit 2023

Connecting the Global Rare Disease Community

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

Indo US Bridging RARE Summit 2023 is a Hybrid Event

Live and in-person at Van Metre Hall, George Mason University

Registrations Details

Fee details chart for the Indo-US Bridging RARE Summit 2023.
Registration fee chart for the Indo-US Bridging RARE Summit 2023, Gala & Awards ceremony.
Register now button image.
  • Please note that only the Indo US Bridging RARE Summit sessions can be attended virtually. The Gala and Awards Ceremony is an in person only event, and will require your presence at the venue
  • *Valid only if the ticket is purchased along with Summit registration. This rate will not be applicable if tickets are purchased separately at any later point in time.
  • Please note Discount is NOT applicable on Gala Ticket.

Gala and Awards Ceremony

Gala and Awards Ceremony

Indo US Bridging RARE Summit Gala Dinner & Award Ceremony

Get your tickets now

Agenda

Interested in becoming a speaker?

Submit Speaker Abstract

*All times are based on US Eastern Time

  • Welcome Note
  • Lamp Lighting
  • Invocation: A Group of Indian American Students in the BHCR
  • Welcome to the SUMMIT and Opening Address

Harsha Rajasimha, MS Ph.D.

Frank Sasinowski, JD, MPH

  • Special Talks from Guests of Honor
  • Key Note 1 US
  • Key Note 2 India
  • Panel Discussion: Patients, Advocates, PAGs

(views from patient advocates from the US, EU, and India)

Naveen Baweja

Priyanka Kakkar

Gautam Dongre

Suyog Sathe

Samir Sethi

Dorothea Lantz

Allyson Berent

Networking Break

Plenary keynote

  • How to engage and collaborate better?
  • Diversity, Equity, Inclusion (DEI) in the context of the Indian Community
  • Sickle Cell Disease (hematological disorders), Neuromuscular dystrophies, Lysosomal storage disorders, Autoimmune, Dermatological, Leukodystrophies, and other rare disorders prevalent among the Indian diaspora.
  • Panel discussion

Veronica Moore, MA

Manan K. Shah, MBA, MPAP

Marlene Soto-Riera

Teresa Ginger Davis

Bonnie Schneider

Lunch (12:00pm to 1:00pm)

  • Rare Epilepsies
  • Undiagnosed Diseases
  • Disease "Avatars", Biobanking
  • Data and AI in Rare Diseases

Plenary keynote

Screening, diagnosis, and treatments for rare disease patients – differences across geographies

Reena Kartha, MS, PhD

Madhulika Kabra, MD

Joanne Lumsden, PhD

Harsh Sheth, PhD

Ashish Gupta, MD

Networking Break

Current status and strategies to increase global representation

Subha Madhavan, PhD

Sophia Zilber

Paul Mehta, MD

CEO of ABHA, NHA

Networking Happy Hour

Keynotes from the greats

Abbey Meyers Khushi Bridging RARE Award

Indo-US Fusion Entertainment

Banquet Dinner

Vikram Karnani, MS, MBA

Abbey S. Meyers, PhD

Honoree 1: Padmashree Dr. IC Verma

Honoree 2: TBD

Ambassador Taranjit Singh Sandhu (Invited)

Senator Warner (Invited)

Congressman Shri Thanedar (Invited)

Dr. Mani Sreenivas and Team

Close of Day 1

Networking Breakfast (7:00am to 8:00am)

Recap of Day 1

Reena Kartha, Ph.D

Keynote Address

Regulatory and policy differences in various geographies, and how we can develop a global framework to bring access to treatments everywhere

What are the pathways for rare disease drugs in India?

Peter Marks, MD, PhD

Ministry of Health and Family Welfare, India

Bhaskar Sonowal, MBBS, MBA

Experts from FDA and DCGI

Networking Break

Challenges with conducting rare disease clinical trials in areas other than the Western World, Emphasis on India

Moke Sharma, MBA

Rusty Clayton, DO

Scott Schliebner, MPH

Patient Perspective

Networking Break

  • What are current strategies for large and small companies?
  • Why is there a lack of emphasis on geographies other than the US and Western Europe?
  • What can be done to change this scenario?

Meredith Manning, MBA

Mike Blum, MBA

Matthew Pauls, MBA, JD

Kylie O'Keefe

Lunch (12:30 pm to 1:30 pm)

  • Mental Wellbeing in Rare Diseases
  • Environmental Factors Affecting Rare Diseases
  • Startup Ecosystem in Rare Diseases
  • New Born Screening, Diagnosis
  • Global Clinical Trial Operations for Orphan Drugs
  • Global Commercialization of Orphan Products
  • Global Regulatory Strategies
  • Policy Advocacy - Impact of Recent Legislations and Policy Guidelines

Keynote Address

Panel Discussion

P.J. Brooks, PhD

Mohua Chakraborty Choudhury, PhD

Dean Suhr, BS

Theresa Strong, PhD

Sheffali Gulati, MD

Networking Break

Volunteer Recognition

  • ART4RARE
  • Youth Ambassadors
  • Advocacy
  • Communications

Treasurer and Board Member

Nisha Venugopal, Ph.D.

Pre-arranged Bus tours of local attractions and counties to showcase resources and capabilities in the BHCR region.

Close of Day 2

Keynote Speakers


Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Peter Marks, MD, PhD

Director Center for Biologics Evaluation and Research (CBER) FDA
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Vikram Karnani, MS, MBA

Executive Vice President and President Global Commercial Operations and Medical Affairs, Horizon Therapeutics

Our Speakers


Mr. Gautam Dongre, Secretary, National Alliance of Sickle Cell Organizations (NASCO), India.

Gautam Dongre

Secretary, National Alliance of Sickle Cell Organizations (NASCO), India.  
Mr. Naveen Baweja, Co-founder, Cure ADSSL1.

Naveen Baweja

Co-founder Cure ADSSL1
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Mohua Chakraborty Choudhury

MPH student Johns Hopkins University & Visiting Scholar IISC
Ms. Priyanka Kakkar, Co-founder, Cure ADSSL1.

Teresa Ginger Davis

President Sickle Cell/Thalassemia Patients Network Inc.
Ms. Priyanka Kakkar, Co-founder, Cure ADSSL1.

Dr. Ashish Gupta

Assistant Professor University of Minnesota
Ms. Priyanka Kakkar, Co-founder, Cure ADSSL1.

Priyanka Kakkar

Co-founder Cure ADSSL1
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Meredith Manning

President – The Americas PharmaEssentia USA Corporation
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Dr. Paul Mehta

Principal Investigator National ALS Registry, CDC/ATSDR
Mr. Suyog S., Director, International Gaucher Alliance (IGA) Secretary, Lysosomal Storage Disorders Support Society (LSDSS) India.

Suyog S.

Director, International Gaucher Alliance (IGA) Secretary, Lysosomal Storage Disorders Support Society (LSDSS) India
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Bonnie Schneider

Director & Co-Founder IgA Nephropathy Foundation
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Samir Sethi

President Indian Rett Syndrome Foundation
Mr. Manan K. Shah, Vice President, Global Health Equity & Policy Partners, BMS.

Manan K. Shah

Vice President Global Health Equity & Policy Partners, BMS
Dr. Harsh Sheth, Assistant Professor & Head Advanced Genomic Technologies Division, FRIGE Institute of Human Genetics, India.

Dr. Harsh Sheth

Assistant Professor & Head Advanced Genomic Technologies Division, FRIGE Institute of Human Genetics, India
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Marlene Soto-Riera

RARE Parent Caregiver & Advocate Helping Swans Co.
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Srinath TL

CEO & Founding Director GenoPhe Biotech Pvt. Ltd.

Summit Planning Committee


Ms. Amy Adams, Ph.D.,Institute for Biohealth Innovation, George Mason University.

Amy Adams, Ph.D.

Institute for Biohealth Innovation, George Mason University
Mr. Rich Bendis, BioHealth Innovation and BioHealth Capital Region Forum.

Rich Bendis

BioHealth Innovation and BioHealth Capital Region Forum
Mr. Anish Bhatnagar, MD, IndoUSrare and Soleno Therapeutics.

Anish Bhatnagar, MD

IndoUSrare and Soleno Therapeutics
Ms. Madhulika Kabra, MD, All India Institute of Medical Sciences (AIIMS, Delhi).

Madhulika Kabra, MD

All India Institute of Medical Sciences (AIIMS, Delhi)
Ms. Reena Kartha, MS, Ph.D., IndoUSrare and Center for Orphan Drug Research, UMN.

Reena Kartha, MS, Ph.D.

IndoUSrare and Center for Orphan Drug Research, UMN
Ms. Juhi Naithani, MBA, IndoUSrare and bGlobal Consulting.

Juhi Naithani, MBA

IndoUSrare and bGlobal Consulting
Mr. John Newby, JD, Virginia Bio.

John Newby, JD

Virginia Bio
Mr. Harsha Rajasimha, MS, Ph.D., IndoUSrare and Jeeva Informatics Solutions.

Harsha Rajasimha, MS, Ph.D.

IndoUSrare and Jeeva Informatics Solutions
Mr. Frank Sasinowski, MPH, JD, IndoUSrare and Hyman Phelps McNamara PC.

Frank Sasinowski, MPH, JD

IndoUSrare and Hyman Phelps McNamara PC
Mr. Bhaskar Sonowal, MBBS, MBA, IndoUSrare and HED Healthcare.

Bhaskar Sonowal, MBBS, MBA

IndoUSrare and HED Healthcare
Mr. K Thangaraj, Ph.D.,Centre for DNA Fingerprinting and Diagnostics (CDFD).

K Thangaraj, Ph.D.

Centre for DNA Fingerprinting and Diagnostics (CDFD)

Organizing Secretariat

Nara Govindarajan, MS

IndoUSrare

Nisha Venugopal, Ph.D.

IndoUSrare

Annaliess Trommatter

Institute for Biohealth Innovation, GMU

Ramya Karur

IndoUSrare

Katie Maney

Institute for Biohealth Innovation, GMU

Poster Presentation

Present Your Research at the Indo US Bridging RARE Summit 2023

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.

We welcome Posters across a broad range of themes including:

  • Cross Border Patient Engagement
  • Indo-US Comparisons in Care Pathways - Screening, Diagnosis, & Treatment Options
  • Data Privacy and Governance Across Borders
  • Clinical Trials for Orphan Drugs
  • Advances in Regulatory Pathways for Orphan Products
  • DEIA and Globalization for Orphan Drug Research
  • Others

Important Timelines to make note of:

  • Abstract Submissions - Sept 29th 5pm ET
  • Committee Decisions - Oct 6th 5 pm ET
  • Presenter Acceptance deadline - Oct 10th 5 pm ET
  • Digital Poster Submission - Oct 15th 5pm ET

Submit Poster Abstract

Gold Sponsor

Logo of EXCELA Pharma Sciences.

Silver Sponsors

Logo of BFS.
Logo of larimar.
Logo of BFS.

Sponsors

Logo of amicus.
Logo of BFS.
Logo of Prince William County Virginia.

Sponsorship Opportunities

Souvenir Book

Color Advertising Rates
Back Cover $5,000
Inside Cover $3,000
Full Page $1,500
Half Page $750

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.


Specifications

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.

File Size

  • Full page ad: 7.5” x 10”
  • Half page ad: 3” X 5”

File Format

  • High-resolution PDF or JPEG ( minimum 300 DPI resolution)
  • All color files must be created using CMYK
  • All files should have embedded fonts.

Files that do not meet these requirements will not be accepted. Quality of printing will depend upon the sharpness of the images used.

Submissions

  • Ads may also be emailed to summit@indousrare.org

LAST DATE FOR SUBMISSIONS: 20 September 2023

Travel

Van Metre Hall, George Mason University,
3351 Fairfax Dr, Arlington, VA 22201, United States

Travel Fellowships that you can apply for

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.

Uplifting Athletes Researcher Travel Program

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.