People to People Health Foundation (PPHF), a public health organization working towards improved health and wellbeing through locally driven solutions, organized a Virtual Consultation on rare diseases with the eastern states of India. The consultation was the first in the series – “The Blueprint for Rare Disease in India”, an attempt to enhance policy commitment to prioritize access, investment, and partnerships on rare diseases in India. The event was jointly organized by PPHF and the Government of West Bengal and was co-powered by Takeda Pharmaceutical.

The objective of the virtual consultation was to discuss and address the key issues that come in way of tackling rare diseases. Major points were the management of rare diseases, make a list of priority actions, explore partnership opportunities across the stakeholders and beyond for the development of better infrastructure, diagnosis, and management systems. Emphasis was also given on increasing collaboration and commitment to address Rare Disease challenges. Apart from that, the high-level recommendations that came out from the consultation will be shared with the Government of India and the Ministry of Health and Family Welfare to further strengthen the upcoming “Rare Diseases – National Policy”. This was the first Regional Consultation of the proposed three regional consultations to be held in the coming months. An International Conference will be held on the international rare disease day i.e., 28^th February 2021.

On the occasion, Dr. Saumitra Mohan, Mission Director, NHM, West Bengal, said, “Rare diseases call for a more involved, informed, and effective solution. Together, we can look for answers and learn from one another. With the application of a multi-sectoral approach, we can leverage each other’s strengths to create an enabling ecosystem for the people affected by different rare diseases.”

During the event three thought-provoking panel discussions on subjects – 1)’ Key unmet needs in the management of rare diseases at the State level & Priority actions for states and best practices,2) ‘Collaborations for better infrastructure, diagnosis & management’, and;3) ‘Indispensable role of peer support groups in prioritizing rare diseases’ happened where experts put their opinion to tackle the challenge of rare diseases.

“There are significant unmet medical needs in Rare Diseases in India. Aspects such as awareness, early diagnosis, timely treatment, and support should be brought to the fore in order to support patients suffering from rare diseases. While the government is working towards introducing the Rare Diseases policy which will be hugely beneficial for patients, it is equally important for all stakeholders to come together in support of rare diseases patients. Takeda is committed to enhancing access to medicine and innovative therapies to the country to contribute towards improving the lives of patients suffering from rare diseases,” Mr. Koki Sato, GM, Takeda India, said.

Rare diseases affect a small fraction of people, mitigating the availability of resources and research.

Speaking during the webinar, Dr. Laxmikant Palo, CEO, PPHF, said, “Meticulous planning and better management is essential to tackle the menace of rare diseases. It is essential to meet the needs of people living with rare diseases. This was a wonderful discussion where experts recommended some concrete measures that we would like to send to policymakers. At, PPHF, we work collaboratively with stakeholders for better access to healthcare solutions.”

The event started with the welcome note by Dr. Laxmikant Palo, CEO, PPHF followed by a keynote address by the dignitaries like Ms. Kriti Garg, Mission Director, NHM, Andaman & Nicobar Islands, Dr. Saumitra Mohan, Mission Director, NHM, West Bengal, Dr. Pempa Tshering Bhutia, Shri. Narayan Swaroop Nigam, Principal Secretary, Health, West Bengal. Besides, the event saw the participation of 100 -150 distinguished personalities from academia, industry bodies, research, alternate ministries, neighboring states, PSUs, judiciary, NGOs, civil societies, PAGs, etc.