The Organization of Rare Diseases India (ORDI) recently presented a session on Rare Diseases on NewsX. There were four power-packed panels of experts that joined in the session that was divided into four segments covering various aspects concerning the topic. The four segments were: Rare Diseases: The Untold & Unheard Saga; Rare Diseases: The Indian Scenario; RaceFor7: Walk/ Run/ Ride; Rare Diseases: Hopes from the government.
RARE DISEASES: THE UNTOLD AND UNHEARD SAGA
Dr Meenakshi Bhatt, Consultant, Clinical Genetics, CHG, Bengaluru kick-started the first segment. Dr Bhatt said, “Rare diseases happen very infrequently in the population. In countries other than ours, there is a definition, sometimes it is defined in certain countries as something that happens less than once in a population of two lakh. In some other countries, there is a definition that one in 2,500 or less of the population is affected by a disease.”
This segment was also joined by Prasanna Shirol, Co-founder & Executive Director, ORDI, Sangeeta Barde, Co-founder Director, ORDI, Lalith S, Director, ORDI & father of kids with Sanfilippo syndrome, Arouba Kabir, Counselor & Mental Health therapist, Dr Sujatha Jagdeesh, Head of Clinical Genetics, Mediscan, Chennai, Dr Ann Agnes Mathew, Pediatric Neurologist, Baptist Hospital, Bangalore, Dr Shubha Phadke, Professor & HOD, Medical Genetics, SGPGI.
RARE DISEASES: THE INDIAN SCENARIO
Giving an introduction of ORDI, Prasanna Shirol, Co-founder & Executive Director, ORDI said in his inaugural address, “ORDI is an umbrella organization which represents 7,000 plus Rare Diseases. We work in the area of advocacy, awareness and patient support.” Shirol’s quest to finding answers to multiple questions in the area of rare diseases led him to find the organization. He struggled through his life as his 22-year-old daughter is India’s first Pompe patient which is a rare genetic and neuromuscular disease.
Other contributors of this segment of discussion were Dr Sumita Danda, Professor & Head, Department of Clinical Genetics, CMC, Vellore, T.S. Singh Deo, Health Minister, Chhattisgarh, Ashutosh, parent of a child of IEM, Samir Sethi, President at Indian Rett Syndrome Foundation, Dr Sarthak Kamath, MD, Psychiatry and is living with DMD, Vaishali Pai, Occupational Therapist & Founder, Tamahar Trust, Bengaluru, Manjeet Singh, President, LSDSS and he also lost his child to MPS, Dr Ratna Puri, Professor and Chairperson, Institute of Medical Genetics, Sri Ganga Ram Hospital, Dr Sanjeeva G.N., Associate Professor, Pediatrics, IGICH, Bangalore, Anil Raina, General Manager, Sanofi Genzyme, Gitanjali Sehgal, Co-founder, FSMA and is an aunt to an SMA girl and Sunila Thatte, Vice President & Head- R&D Solutions India at IQVIA.
RACEFOR7: WALK/ RUN/ RIDE
Racefor7 is a yearly event that ORDI conducts for the past six years. It symbolically represents the 7,000 rare diseases with 7,000 people running for seven kilometres. Shirol said that it is a mass awareness run/ walk/ ride. He added that it is a unique and largest such program in the world where so many people join to create awareness who are unaffected for causes like rare diseases. This year, this event was held virtually on 28 February.
Segment 3 panellists were Shirol, Barde, Dr Bhatt, Kabir, Sirisha, OI Warrior, President awardee, Anand Shah, Trustee of PPMD India, Uttam Sahoo, teacher & parent of Progeria child Aditya from Uttarakhand, Dr Suresh Hanagawadi, President, Karnataka Hemophilia Society & Professor of Pathology, JMM Medical College, Davangere, Dr Prakash Gambhir, Chief Medical Scientist, Lifecell & Fetomed, and Thatte.
RARE DISEASES: HOPES FROM THE GOVERNMENT
In the last segment of the session on rare diseases, the panellists shared the challenges that the government perhaps needs to take account of. Taking the same conversation ahead, Dr Puri said, “Being a doctor who has been working half lifetime with patients with rare diseases, I think we deal with a very large population and the priorities from the health administration side are probably different. We see our priorities as the most vital, I do agree with the parent community, they are vital because every child has a right to life but we are moving ahead and I hope that with all this, with the noise that is being created, with the platforms that are coming forward to take the voice and the importance of treating children with rare disorders, we are all waiting for a good rare disease policy.”
The power-packed panel that joined this segment included Shirol, Barde, Dr Bhatt, Dr Puri, Sehgal, Sethi, Dr G.N., Raina, Thatte, Dr Mathew, and Pai.