Emcees: Rohan Honganoor, Ben Morin, Sirichandana Yakkala
A Warm Welcome by Hosts and Partners
Invited Talks and Chief Guests
Patient Keynote
Entertainment - Indo US Fusion Theme
Abbey Meyers Khushi Bridging RARE Award Ceremony
Who is a patient advocate?
Goal setting for patient advocates
What has patient advocacy achieved?
Role of patient advocacy in drug development
How to be an effective communicator as a patient or caregiver?
Involving Industry and Academics in Drug Development
Jean Campbell, Professional Patient Advocates in Life Sciences (PPALS)
Dr. Ratna Devi, DakshamA Health
Mohua Chakraborty Choudhury, PhD, MPH, IISc
David Rintell, Ed.D, BridgeBio
Nita Patel, BSN, Ex-Amicus Therapeutics
Nahid Zaman, Astrazeneca India
Dr. B.S. Charan, DGHS
Occupational and physical therapies relevant to rare diseases
Self-care, managing emotions, and guilt
Cristol O’Loughlin, RaregiversTM
Vaishali Pai, Tamahar Trust
Team Premas Life Sciences
Debjani Saha, Premas Life Sciences
Dr. Rahul Ramekar, Premas Life Sciences
Lakshman Teja, Premas Life Sciences
Dr. Vikas Sharma, Premas Life Sciences
Priyanka Singh, Premas Life Sciences
Ratna Dua Puri,MD, DM, SIAMG
Neerja Gupta, MD, DM, AIIMS, Delhi
Co-Chairs
Priyankana Mukherjee, PhD, IKP Eden
James A. Levine, MD PhD, Foundation Ipsen
Chief Guest:
Dr. Chandra Sekhar Pemmasani - Minister of State for Rural Development and Communication
Keynote - Abbey Meyers Khushi Bridging RARE Award Honorees:
Dr. Rahul Purwar, Dr. Hasmukh Jain
Frank Sasinowski, JD, MPH
Felicitation
Dr. Abbey Meyers, Founder, NORD
Patient community voices:
Gautam Dongre, NASCO
Shikha Metharamani PWSA - India
Sunil Ladwa, FOP India
Performances:
Tabla recital - Saksham Mishra
BharataNatyam performance - Mansa Gautam and Raunika Negi
Vocal performances - Chetan Chawla and Ms Ridisha
Harsha K Rajasimha, MS, PhD, Summit Chairperson
Amy Adams, PhD, Institute for Biohealth Innovation, George Mason University
Moderator:
Gerald Farrokh Daneshvar, MD, Ainsley Advisory Group
Sara Tylosky, MBA, Farmacon Global
Tina Aswani-Omprakash, MPH, South Asian IBD Alliance
Mohammed Duklef, Epidermolysis Bullosa
Tanya Collin-Histed - International Gaucher Alliance (TBC)
Screening and Diagnosis
Moderator:
Reena Kartha, MS, PhD
Plenary keynote:
Madhulika Kabra, MD, ICMR
Speakers:
Nishitha Pillai, MD, UMN
Tshaka Cunningham, PhD, Athari Bio
Madhusudhan Vadhiar, PhD, LifeArc
Moderators:
Donney John, PharmD, NOVA ScriptsCentral
Plenary Keynote:
Andrea Meredith, PhD, NINDS/NIH
Navneet Matharu, PhD, Regel Therapeutics
Narendra Chirmule, PhD, SymphonyTech Biologics
Neerja Gupta, MD, DM, AIIMS, New Delhi
Aaron Abend, MBA, Autoimmune Registry Inc.
Anish Bhatnagar, MD, IndoUSrare & Soleno Therapeutics
Karla MacDonald, Entrada Therapeutics
Sanket Shah, MBBS, PhD, Jazz Pharma
Parva Purohit, Amneal (TBC)
Pankaj Bhargava, Ashi Bio (TBC)
Sonit Handa, MD, MS, MBA, Biovance Consulting LLC
Session Sponsor:
Venkatesh Krishnaiah, Cloudthrottle
Harsha Rajasimha, PhD, Jeeva Clinical Trials
Christopher P. Boone, PhD, FACHE, FHIMSS, Oracle Corporation
Himanshu Kansara, TheGoodAI
Rich Bendis, BioHealth Innovation
Anish Bhatnagar, MD, Soleno Therapeutics
Christiaan Engstrom, Bullpen Club
John Newby, JD, Virginia Bio
Mahesh Narayanan, Neuvation Ventures
Arti Santhanam, PhD, ETC
Reena Kartha, MS, PhD, IndoUSrare and UMN
Dr. Vijay Kumar, OTP/CBER, US FDA
Mathew T Thomas, MBBS, IndoUSrare & MTT Consulting
Isaac Rodriguez-Chavez, 4Bio Consulting
Sandra Retzky, Office of Orphan Products Development (OOPD), US FDA TBC
Scott K. Winiecki, MD, CDER, US FDA
Julienne Vaillancourt, CBER, US FDA
John F. Crowley, Biotechnology Innovation Organization (BIO)
Dr. Ratna Devi, DakshamA Health
Annie Kennedy, EveryLife Foundation
Anil Bonde, Indian Medical Parliamentarians Forum (IMPF), TBC
Session Sponsor: Ishan Anand, Esq, Immigrants First
Moderator: Jenifer Waldrop, Rare Disease Diversity Coalition (RDDC)
Panelists:Prof. Lara Bloom, The Ehlers-Danlos Society
Partha Mukherjee, PhD, Amicus Therapeutics
David Rintell, BridgeBio
Jennifer Farmer, MS, Friedreich's Ataxia Research Alliance
Sambit Mohanty, Entero Healthcare Solutions Ltd
Moderator:
Harsha Rajasimha, PhD, Jeeva Clinical Trials
Plenary Keynote: Marshall Summar, MD, Uncommon Cures
Hemang Maniar, Duke Clinical Research Institute (DCRI)
Gurdyal Kalsi, MD, MFPM (Hon), Asklepion Pharmaceuticals
Del Smith, PhD, Acclinate
Plenary Keynote:
Anand Swaroop, PhD, National Eye Institute (NEI), NIH; Tentatively confirmed.
TJ Bichell, COMBINED Brain
Sheffali Gulati, AIIMS Delhi
Brian Tseng, MD, POLG Foundation
Nandita Roy & Saikat Sarkar, SSPE Family
Indo US RARE Working Group Discussion
Developing a Blueprint for US-India Strategic Cooperation for Rare Diseases Research and Orphan Drugs Development
WORKING GROUP 1: NBS, Screening, Diagnosis, Patient Registries, Referral Networks
WORKING GROUP 2: Strategy to Achieve Equitable Representation of Indian Diaspora in CRAACO, Clinical Trials
WORKING GROUP 3: Legislative, Regulatory, Financial Advocacy, the ASK: Indian and US Legislators, CDSCO and FDA. E.g., ASHA program for Cancer Clinical Trials.
WORKING GROUP 4: BioSecure ACT and Inflation Reduction Act of USA and Food/Drugs/Cosmetics Act and NPRD of India - How India can play a greater role in affordable Innovation, R&D, and Manufacturing?
Action Items from Working Groups
Summaries to be published in Proceedings Article
BREAK OUT WORKING GROUPS with Whiteboarding
All participants have selected a working group to lead or contribute or participate.
Working Group Leaders
Vote of Thanks
