The event was co-powered by Takeda Pharmaceutical and supported by Japan Embassy
Government of Karnataka along with People to People Health Foundation (PPHF), a public health organisation, recently organised the third edition of Rare Disease Consultation under the initiative titled ‘Blueprint of Rare Diseases in India’. The virtual conference was aimed at prioritising access, investment, awareness, policy framework and partnerships on rare diseases in the southern states of India. The event was co-powered by Takeda Pharmaceutical and supported by Japan Embassy.
Eminent personalities and leading policy experts during the virtual conference underlined the need for increasing collaboration, commitment and frameworks to address challenges posed by rare diseases in the country. The high-level recommendations which were the outcome of the discussions will be shared with the government to strengthen the national framework on rare diseases in different regions. The conference was the third event in the series of the three regional conferences. The first two editions were held in collaboration with the Government of West Bengal, UT of Chandigarh and the Government of Punjab, which focussed on the eastern and northern regions of India respectively.
Dr Laxmikant Palo, CEO, PPHF, said, “India has done commendable work under various health areas and should be open and flexible for learning from other health models when it comes to rare diseases.”
The virtual conference saw engaging and thought-provoking discussions on the role of private and public sector units to control rare diseases, reflections from patient support groups, needs in the management of rare diseases, defining priority actions, among others.
Dr Arundhati Chandrashekhar, IAS, Mission Director, NHM, Karnataka, said, “Thorough planning, timely management, genetic counselling and antenatal screening are essential to control, treat and prevent rare diseases in India. By working collaboratively with all stakeholders, we can make sure that patients with rare diseases get better access to healthcare solutions for overall wellbeing.”
The event started with a welcome address by Dr M Naina Rani, (Child Health Advisor, Child Health Division, National Health Mission, Directorate of Government of Karnataka) and Dr Palo followed by keynote addresses from dignitaries including, Dr J Radhakrishnan, Principal Secretary to Government Health and Family Welfare Department, Tamil Nadu, Dr Ratan Khelkar, MD, NHM, Kerala, Jawaid Akhtar, IAS Additional Chief Health Secretary, Government of Karnataka, Dr KV Thrilok Chandra, Commissioner, Department of Health and Family Welfare, Government of Karnataka.