To chalk out solutions and to address the key challenges of rare diseases in India, Government of Karnataka along with People to People Health Foundation (PPHF), a public health organisation working towards better healthcare, 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 Indian Government to strengthen the national framework on rare diseases in different regions.
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.”
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 well-being.”
Gopal Agrawal, Head of Access Markets Transformation, ICMEA, Takeda, said, “Blueprint for Rare Disease is one of such initiative that will help us move closer to our mission of better and healthier life for patients.”
The event also received support from Institute of Child Health, Kolkata, GRID Council, LSDSS, ORDI, RDIF and Cure SMA Foundation of India
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