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About Indo US Bridging RARE Summit 2024

Connecting the Global Rare Disease Community

We are excited to invite you to the Indo US Bridging RARE Summit 2024 to be held on Nov 16-18 in New Delhi, India.

Organized in collaboration with the All India Institute of Medical Sciences, New Delhi, the #BridgingRare Summit 2024 will feature an exciting lineup of prominent speakers from India and the US, workshops, and a Gala dinner and Award Ceremony.

Why join us?

Uniquely positioned to accelerate the engagement of the global rare disease community in Orphan Drug R&D

Highly informative and educational sessions

Great networking opportunities

Special focus on India and emerging markets

The event will take place in HYBRID mode with live streaming of sessions and an excellent online networking platform.

about-us

Indo US Bridging RARE Summit 2024 is a Hybrid Event

Live and in-person at Indian National Science Academy (INSA), New Delhi

Registrations Details

  • 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

*All times are based on Indian Standard Time (UTC+5:30)

Registration opens (1:00 pm)

Pre-conference Workshops (2:00 pm - 5:00 pm)

Co-Chairs

Harsha Rajasimha, Ph.D., Jeeva Clinical Trials

Tshaka Cunningham, PhD Polaris Genomics Inc.

Sowmya Kaur, Navitas Life Sciences (TBC)

Rakesh Lodha, Prof of Pediatrics, AIIMS, Delhi

Co-Chairs

Jean Campbell, Professional Patient Advocates in Life Sciences (PPALS)

Ratna Devi, DakshamA Health (TBC)

Co-Chairs

Cristol O’Loughlin, RareGivers

Co-Chairs

Debjani Saha, Praveen Gupta Premas Life Sciences

Co-Chairs

Priyankana Mukherjee, PhD, IKP Eden

  1. Inauguration - Lamp Lighting
  2. Bridging RARE Celebration Fusion Music and Videos!
  3. Keynotes
  4. Abbey Meyers Khushi Bridging RARE Awards Ceremony
  5. Entertainment and Gala Dinner

Close of Day 1

Registration Opens (8:00 am)

Co-Chairs

Harsha Rajasimha, MS, PhD, Indo US Organization for Rare Diseases

Madhulika Kabra, MD, All India Institute of Medical Sciences, New Delhi (AIIMS-Delhi)

Speaker

David A Pearce, PhD International Rare Disease Research Consortium (IRDiRC)

Co-Chairs

Vijay Chandru, PhD, FNAe, FASc, Strand Life Sciences

Ashwin Dalal, MD, DM, Centre for DNA Fingerprinting and Diagnostics (CDFD)

Networking Coffee (Posters and Exhibits) 11:30 am - 12:00 pm

Co-Chairs

Neerja Gupta, MD, DM All India Institute of Medical Sciences, New Delhi (AIIMS-Delhi)

Alok Srivastava, MD (TBC) Christian Medical College, Vellore

Lunch (1:30 pm - 2:30 pm)

TBD

Networking Coffee (Posters and Exhibits) 4:00 pm - 4:30 pm

Co-Chairs

Madhulika Kabra, MD

Paul Mehta, MD CDC/ATSDR

Networking and Buffet Dinner (6:00 pm - 8:00 pm)

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

Close of Day 2

Session Chair

Madhulika Kabra, MD

Speaker

Dr. Peter Marks CBER, FDA

Co-Chairs

Dr. Mathew Thomas, former FDA India

Dr. Raghuvanshi, DCGI (TBC)

Networking Coffee (Posters and Exhibits) 11:00 am - 11:30 am

Co-Chairs

Mathew Pauls, Savara

TBD

Lunch 1:00 pm - 2:00 pm

Co-Chairs

Dr VK Paul, NITI Ayog

TBD

Co-Chairs

Anish Bhatnagar, MD

Dipal Doshi, MBA, Entrada Tx (TBC)

Networking Coffee (Posters and Exhibits) 3:30 pm - 4:00 pm

Co-Chairs

TBD

Closing Remarks and Action Items from Working Groups (5:30 pm - 6:00 pm)

Vote of Thanks 6:00 pm - 6:30 pm

Close of Day 3 (6:30 pm)

Keynote Speakers


Dr. David A Pearce PhD

Dr. David A Pearce PhD

President Innovation & Research, Sanford Health. Chair, International Rare Disease Research Consortium (IRDiRC)
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Peter Marks, MD, PhD

Director Center for Biologics Evaluation and Research (CBER) FDA

Dr. L Swasticharan

Additional DDG and Director (EMR) Directorate General of Health Services Ministry of Health and Family Welfare, Govt of India
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

Special Address


AbbeySMeyers

Abbey S Meyers, PhD

Founder and past President National Organization for Rare Disorders (NORD)

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

Mohua Chakraborty Choudhury, PhD

MPH student at Johns Hopkins University Visiting Scholar at IISc

Teresa Ginger Davis

President Sickle Cell/Thalassemia Patients Network Inc.

Ashish Gupta MD, MPH

Assistant Professor Pediatric Blood and Marrow Transplantation & Cellular Therapy University of Minnesota
Mathew Pauls

Mathew Pauls, MBA, JD

CEO Savara,Inc.

Theresa Strong, PhD

Co-founder and Director of Research Programs Foundation for Prader-Willi Research (FPWR)
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
Sophia Zilber

Sophia Zilber

Associate Director, Statistical Programming Cure Mito Foundation
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Paul Mehta, MD

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
Dr. Harsh Sheth, Assistant Professor & Head Advanced Genomic Technologies Division, FRIGE Institute of Human Genetics, India.

Harsh Sheth, PhD

Assistant Professor & Head Advanced Genomic Technologies Division, FRIGE Institute of Human Genetics, India
Cristol Barrett O'Loughlin

Cristol Barrett O'Loughlin

Founder and CEO Angel Aid
Dorothea Lantz, MPA

Dorothea Lantz, MPA

Director of Community Engagment Prader-Willi Syndrome Association | USA
Maria Della Rocca

Maria Della Rocca, MS, PMP

Sr. Director, Support & Education Programs Global Genes
Nikhil Bumb

Nikhil Bumb, MS, MBA

Managing Director FSG
TamannaTannan

Tamanna Roshan Lal, MB ChB

Chief Medical Officer Uncommon Cures
Subha Madhavan, PhD

Subha Madhavan, PhD

VP & Global Head of AI/ML & Digital Sciences Pfizer R&D
Isaac Rodrigues- Chavez

Isaac Rodriguez-Chavez, PhD

Principal Consultant & CEO 4Biosolutions Consulting

Rusty Clayton, DO

Chief Medical Officer Larimar Therapeutics, Inc.
Ms. Meredith Manning, President – The Americas Pharma Essentia USA Corporation.

Parthiban Srinivasan

- -
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, PhD

CEO & Founding Director GenoPhe Biotech Pvt. Ltd.
Mike Blum

Michael Blum MBA

Vice President, Commercial Strategy Homology Medicines, Inc.
Dean Suhr

Dean Suhr, BS

President MLD Foundation
Alison Bones

Alison Bones, BBA

President and CEO T.E.A.M. 4 Travis (Together Ending Asplenia Mortality)
Mokesharma

Moke Sharma, MBA

SVP, Head of Global Development Operations Bristol Myers Squibb
Pankaj Bhargava

Pankaj Bhargava, MD

CEO ashibio
Pankaj Bhargava

Neil Kumar, PhD

CEO and Founder BridgeBio Pharma
Pankaj Bhargava

Prof. Sheffali Gulati, MD, FRCPCH (UK), FAMS, FIAP, FIMSA

Professor, Program Director, DM Pediatric Neurology Programme AIIMS, Delhi
Pankaj Bhargava

Gabi Conecker, MPH

Executive Director and Co-Founder Decoding Development Epilepsies

Shifali Gupta, MD

- Post Graduate Institute of Medical Education and Research

Dr. Amlin Shukla

Scientist D Indian Council of Medical Research (ICMR)

Tiina Urv, PhD

Program Director Rare Diseases Clinical Research Network (RDCRN)

Sarah Friedhoff

Director Patient Advocacy at Astria Therapeutics

Sukumar Nagendran, MD

President and Head of R&D TAYSHA Therapeutics

Somasekhar Seshagiri, MS, PhD

Chief of Genomics and Informatics MedGenome Inc.

Sumati Nambiar MD MPH

Present Your Research at the Indo US Bridging RARE Summit 2024

Join an exciting line-up of speakers & presenters!

We invite you to share your knowledge and experience with the global rare disease community.

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.

Speaker and Poster Abstract Submissions

We welcome abstracts 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

Poster abstract deadline: July 15th 2024

Speaker abstract deadline: July 15th 2024

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

Ashwin Dalal, MD, DM

Centre for DNA Fingerprinting and Diagnostics (CDFD)

Neerja Gupta, MD, DM

All India Institute of Medical Sciences (AIIMS, Delhi)
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, PhD

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

Ratna Dua Puri, MD, DM

Sir Ganga Ram Hospital
Mr. Harsha Rajasimha, MS, Ph.D., IndoUSrare and Jeeva Informatics Solutions.

Harsha Rajasimha, MS, PhD

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

Frank Sasinowski, JD, MPH

IndoUSrare and Hyman Phelps McNamara PC
Mr. K Thangaraj, Ph.D.,Centre for DNA Fingerprinting and Diagnostics (CDFD)

K Thangaraj, PhD

Centre for DNA Fingerprinting and Diagnostics (CDFD)

Advisory Planning Committee


Isaac R. Rodriguez-Chavez, PhD, MHSc, MSc

4Biosolutions Consulting

Teresa Ginger Davis

Sickle Cell Thalassemia Patient's Network (SCTPN)

Paul Mehta, MD

National ALS Registry, CDC/ATSDR

Dr. Mathew  Thomas

MTT Consulting

Vijay Chandru, PhD, FASc, FNAE

Strand Life Sciences

Tshaka Cunningham, Ph.D.

Polaris Genomics Inc.

Organizing Secretariat

Nara Govindarajan, MS

IndoUSrare

Nisha Venugopal, Ph.D.

IndoUSrare

Ramya Karur

IndoUSrare

Saundarya MS

IndoUSrare

Sponsors 2023

Gold Sponsors

Silver Sponsors

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

Sponsors

Souvenir Book

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.


Book An Ad Now!

Color Advertising Rates (In $) Rates (In ₹)
Back Cover $1,500 ₹ 75,000
Inside Cover $500 ₹ 35,000
Full Page $350 ₹ 20,000
Half Page $250 ₹ 12,000

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: 10 October 2024

Conference Venue

Indian National Science Academy ( INSA – New Delhi)

Indian National Science Academy ( INSA – New Delhi)

Bahadur Shah Zafar Marg, Mata Sundari Railway Colony, Mandi House, New Delhi, Delhi, 110002

Accommodation

The Ashok

The Ashok

50, Niti Marg, Diplomatic Enclave, Chanakyapuri, New Delhi, Delhi 110021

The organizers have blocked rooms at The Ashok at special rates for conference attendees. This is a recommended hotel - please write to the summit Secretariat at summit@indousrare.org to book your accommodation

Other Nearby Hotels

Here are our recommendations for hotels nearby the venue. Attendees are requested to contact the hotels directly to book their stay.

The Lalit

Fire Brigade Lane, Barakhamba, New Delhi, Delhi 110001

Le Méridien

Le Méridien, Windsor Pl, Connaught Place, New Delhi, Delhi 110001

Shangri-La Eros

19, Ashoka Rd, Janpath, Connaught Place, New Delhi, Delhi 110001

Indian National Science Academy
Bahadur Shah Zafar Marg, Mata Sundari Railway Colony, Mandi House, New Delhi, Delhi, 110002

Apply for Travel Support

Travel scholarships for the Indo US Bridging RARE Summit are now open. Apply early as limited slots are available!!