Rare Diseases Policy Summit: A DAY OF RARE INSIGHTS

14- Aug-2023: A groundbreaking event, the "Rare Diseases Policy Summit," was successfully conducted by Voice of Healthcare on August 10th, 2023, in collaboration with the Institute of Child Health (ICH), Chennai. Supported by the Rare Diseases Support Society and powered by Takeda, the summit aimed to shed light on critical aspects of rare diseases, their policies, early diagnosis, strategic management, and funding avenues.

The World Health Organization’s (WHO) working definition of Rare Diseases states that these diseases are debilitating, lifelong disorders whose prevalence is less than one per 1,000 persons. India carries over 450 types of rare diseases, a third of the global total. A number of factors contribute to the situation – paucity of resources, lack of awareness, insufficient diagnosis and less than adequate medical research. As India does not have a standard definition of rare diseases, it is difficult to arrive at their exact prevalence.

The goal behind the Rare Diseases Policy Summit, therefore, was to add clarity, method and purpose to the rare diseases landscape, and arrive at actionable ways forward to advocate policy and build ecosystems. 

Dr Madhulika Kabra from AIIMS Delhi – who joined the proceedings online – shared a very detailed description of Rare Diseases. She also touched upon themes like emerging norms of Rare Disease Policy, various stages of diseases, support available to patients, clinical research outcomes and emerging trends globally. 

Queries raised by the doctors were clarified by Dr Kabra. Besides registration and treatment challenges, fund required was another factor - most COEs are exploring ways and means to accommodate more Patients.

Dr Pramod Kumar Sinha took the next session on Financial and Other Resources Linkages, working mechanism of CSR in India and Trends. Since most Doctors are engaged in Clinical Research and Treatment, this was an extended tool for them to learn and understand.

An overview of CSR in India and Prospective Donors were explained to the working Physicians of ICH. Dr Rema Chandra Mohan, Director ICH expressed support on how proposals should be made and approached for possible fund support.

Dr Sinha presented a blueprint of the effective mechanism and checklists for understanding Donor Perspectives and making a Proposal for seeking funds from PSEs and Corporate. Indeed, there was a perceptible sense of relief amongst doctors with Dr Sinha volunteering for such a cause and agreeing to extend his advice to Doctors of ICH, Chennai.

Even though funding alone cannot serve the demand of fund requirements of Patients, it was earnestly felt by all that Individuals drawing a good salary can share some amount for this noble cause by donating small amounts ranging from 1000 to few thousand to allow Government Doctors to continue the treatment of Infants and Children as Gov. Such donations can get benefits of 80G under Income Tax. Crowdfunding on Government Portals of these hospitals is another way for individuals willing to contribute and be a partner to such social causes.

The Interactive Session successfully engaged all stakeholders across AIIMS Delhi, ICH Chennai, Rare Diseases Support Society led by Mr Raja Murugappan. 

*This press release is published by VOH team.*