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Table 1 Details of the OMPOs and the interviewees

From: The work, goals, challenges, achievements, and recommendations of orphan medicinal product organizations in India: an interview-based study

Organization; URL; Type of organization; Year of establishmenta Interviewee; Role of the interviewee in the organization Category of work Vision, mission and goalsb
Aten Porus Lifesciences (APL) (http://www.atenporus.com/) Company; 2014 Dr. Aditya Kulkarnic
Founder and Chief Scientific Officer
Treatment: Drugs Drug discovery for diseases with unmet medical needs in India.
Dystrophy Annihilation Research Trust (DART) (https://dartindia.in/) Not–for–profit Trust; 2012 Dr. Arun Shastryd
Chief Scientific Officer
Treatment: Genomic interventions Research for affordable therapies for muscular dystrophies. Helping families with diagnosis, counselling and management of the disease.
Eyestem (https://www.eyestem.com/) Company; 2015 Dr. Jogin Desaic
Founder and Chief Executive Officer (CEO)
Treatment: Cell therapies Cell therapy that is scalable and affordable.
Genique Lifesciences (GLS) (https://www.genique.co/) Company; 2018 Mr. Abhishek Dasc
Founder and CEO
Diagnostics: Genomic-based diagnostics To make genetic reporting easy-to-understand for clinicians and patients.
Genes, Repair and Regeneration at Ophthalmic Workstation (GROW) (https://www.narayananethralaya.org/grow-research-lab/) Research laboratory based in a not-for-profit hospital; 2013 Dr. Arkasubhra Ghoshd
Director, GROW
R&D Discovery research using patient tissue, targeted towards the following: understand the genetic basis of diseases; modelling of diseases to understand the function of genes in pathological processes; and development of gene therapies and clinical grade vector production for trials in humans.
Genomics for Understanding Rare Diseases - India Alliance Network (GUaRDIAN) (http://guardian.meragenome.com/) Not–for–profit collaborative research program hosted by a government research institute; 2013 Dr. Sridhar Sivasubbud
Principal Scientist at CSIR IGIB & Co-founder of GUaRDIAN
R&D The vision of GUaRDIAN is to establish a unique collaboration framework in healthcare planning, implementation, and translation in the specific area of rare genetic diseases. The program proposes to apply genomics for the systematic characterization and diagnosis of rare genetic diseases in India with the aim of developing affordable and accessible genomic-based diagnostics available to people with rare diseases.
Indus Biotech (IB) (http://www.indusbiotech.com/) Company; 1998 Mr. Sunil Bhaskarand
Founder and Managing Director
Treatment: Drugs To develop botanical drugs for RDs and seek approval from the USFDA, under the orphan drug category.
MedGenome (https://www.medgenome.com/) Company; 2013 Dr. V L Ramprasadd
Chief Operating Officer and Lab Director
Diagnostics: Genomic-based diagnostics Its vision is to enable precision medicine. Its mission is to provide comprehensive molecular testing solutions that helps make an informed decision for drug discovery and disease management. It is the market leader in genetic diagnostics in India and one of the highest throughput NGS sequencing labs in South Asia
Pristine (https://pristineorganics.com/) Company; 2004 Ms. Shruti Kumblad
Senior Nutritionist
Management products: Nutritional products, IEM foods To provide medically-appropriate nutritional food
Redcliffe Life Sciences (RLS) (https://www.redcliffels.com/) Company; 2017 Mr. Ashish Dubeyd
Founder and CEO
Diagnostics: Genomic-based diagnostics DNA based diagnostics for mother and child diseases
Specialized Mobility Operations and Innovations (SMOI) (http://smoi.org/) Company; 2012 Dr. Padmaja Kankipatid
Director
Management products: mobility aids Providing services related to customized wheeled mobility solutions based on the user’s physical, functional and environmental needs, and making world class technology accessible to patients through innovation.
TerraBlue XT (TBXT) (https://www.teblux.com/) Company; 2016 Ms. Rajlakshmic Borthakur
Founder and CEO
Management products: wearable medical devices To create Internet of Things (IoT)- and Artificial Intelligence (AI)- based solutions and wearable medical devices for neurological disorders.
New Organizations
 Center for Drug Discovery (CDD) (http://gne-myopathy.org) Not–for–profit Trust; (CDD was launched in 2019) Dr. Sudha Bhattacharyad
Founder
R&D Mission is to collaborate with various research institutes across the country to fund research leading to the development of therapies for rare diseases, specifically GNE Myopathy
 Genetico (Website under construction) Company; 2019 Mr. Arjun Guptad
Founder
Management products: Genetics and genomics based software technologies. Genetico is a genetics and genomics company focused on discovery science and reducing time to diagnosis in the area of rare diseases. Our goal is to enable cost effective diagnostics and therapeutics in emerging countries.
  1. a Year of establishment refers to the year of registration of the organization, or launch of the program in the case of CDD, GROW, and GUaRDIAN
  2. bmission, vision and goals are not well defined for all of the OMPOs, and we have include any relevant information provided by the interviewees
  3. cThe interviewee responded in personal capacity
  4. dThe interviewee responded as a representative of the organization