Organization of Rare Diseases India (ORDI) recently presented an enthralling session on Rare Diseases on NewsX. There were 4 power-packed panels of experts that joined in the session that was divided into 4 segments covering various aspects concerning the topic. The four segments were:
Dr Meenakshi Bhatt, Consultant, Clinical Genetics, CHG, Bengaluru kickstarted the first segment by enlightening the viewers on Rare Diseases. Dr Bhatt said, “Rare diseases, as the name suggests are the diseases that 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 2 lakhs. In some other countries, there is a definition that 1 in 2,500 or less of the population is affected by a disease.”
“In our own country, we do not have an accepted definition but I think once we are settled on a definition, it should be 1 in 5,000 people who are affected by a particular disease. Collectively, it has a huge impact because of nearly 7,000 Rare Diseases and we estimate that there must be at least 70 million people affected by it in India with a collection of these diseases. What does it do to the people? It affects many systems of the body and sometimes, one individual that’s affected with the Rare Disease can have many parts of their body including their intelligence affected. So, it’s very important that we recognize it early so that we can do something about it,” said Dr Meenakshi.
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.
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. Basically, we work in the area of advocacy, awareness and patient support.”
Mr Shirol’s quest to finding answers to multiple questions in the area of Rare Diseases led him to find the organization. He personally struggled through his life as his 22-year-old daughter is India’s first Pompe patient which is a rare genetic and neuromuscular disease.
Joining in the conversation, Sangeeta Barde, Co-founder Director, ORDI said, “We really came to a conclusion that there is no organization who can look at this in the most holistic manner. So, if one has to really work in the area of Rare Diseases then how can it be most holistic when it comes to addressing majority of these challenges that people encounter. So, that was the reason for the birth of ORDI and the whole mission is therefore around representing the Rare Diseases here in India. It’s not about one disease, it’s about 7,000 diseases that we are talking about. Some of them are not even identified properly, their names are unavailable, patients are unidentified.”
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 is a yearly event that ORDI conducts for the past 6 years. It symbolically represents the 7,000 rare diseases with 7,000 people running for 7 kilometres. Prasanna Shirol, Co-founder & Executive Director, ORDI said that it is a mass awareness run/ walk/ ride. He added that it is 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 will be held virtually tomorrow, to register, go to registration.racefor7.com.
Segment 3 panellists were Prasanna Shirol, Co-founder & Executive Director, ORDI, Sangeeta Barde, Co-founder Director, ORDI, Dr Meenakshi Bhatt, Consultant, Clinical Genetics, CHG, Bengaluru, Arouba Kabir, Counselor & Mental Health therapist, 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 Sunila Thatte, Vice President & Head- R&D Solutions India at IQVIA.
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 Ratna Puri, Professor and Chairperson, Institute of Medical Genetics, Sri Ganga Ram Hospital 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 Prasanna Shirol, Co-founder & Executive Director, ORDI, Sangeeta Barde, Co-founder Director, ORDI, Dr Meenakshi Bhatt, Consultant, Clinical Genetics, CHG, Bengaluru, Dr Ratna Puri, Professor and Chairperson, Institute of Medical Genetics, Sri Ganga Ram Hospital, Prasanna Shirol, Co-founder & Executive Director, ORDI, Gitanjali Sehgal, Co-founder, FSMA and is an aunt to an SMA girl, Manjeet Singh, President, LSDSS and he also lost his child to MPS, Samir Sethi, President at Indian Rett Syndrome Foundation, Dr Sanjeeva G.N., Associate Professor, Pediatrics, IGICH, Bangalore, Anil Raina, General Manager, Sanofi Genzyme, Sunila Thatte, Vice President & Head- R&D Solutions India at IQVIA, Dr Ann Agnes Mathew, Pediatric Neurologist, Baptist Hospital, Bangalore and Vaishali Pai, Occupational Therapist & Founder, Tamahar Trust, Bengaluru.