PPHF organizes virtual consultation to deliberate on the roadmap of Rare Diseases in India
People-to-People Health Foundation (PPHF), a public health organization working for access to holistic healthcare, organizedthe secondconsultation on rare diseases in India. The second edition of the virtual conference, under the initiative “Blueprint of Rare Diseases in India” was held in collaboration with Government of Chandigarh and Punjab, fornorthern India. The initiative is co-powered by Takeda Pharmaceutical and supported by Japan Embassy, Institute of Child Health, Kolkata, GRID Council, LSDSS, ORDI, RDIF, and Cure SMA Foundation of India. This consultationsobjective was to deliberate on key challenges and propose solutions to tackle rare diseases in North India. The consultation also underlined the need for increasing collaboration and commitment to address rare diseases and laid the roadmap in this regard. These high-level recommendations that were the outcome of the consultation will be shared with the Central Government of India and Ministry of Health and Family Welfare to strengthen the national framework on rare diseases in India.
This initiative was the second in the series of the three regional consultations. The third consultation will take place at Karnataka focusing on southern India on 4th February 2021.
On the occasion, Dr Amandeep Kaur Kang, Mission Director, NHM, Chandigarh said: “Rare Diseases are a different ball game all together and need unique solutions. We need to learn from cross country models and execute tailor-made solutions that work for our nation via active involvement if all the key stakeholders simultaneously.”
The event started with a welcome address by Dr Laxmikant Palo, CEO, PPHF followed by keynote sessions by MrK.G. Ananthakrishnan, Director General, OPPI, Dr Amandeep Kaur Kang, Mission Director, NHM, Government of Chandigarh and Dr. G.B Singh, Director Health Services, Government of Punjab. Various sessions were organized including discussions on ‘Clinical Research in rare disease area, challenges, tertiary care experience sharing on treatment aspects, screening and diagnostics, State perspectives from northern states and collaborative models etc.
“Awareness, comprehensive research and timely intervention are vital to tackle rare diseases in India. The initiative is a step forward to enriching the public discourse on rare diseases. Itunderscores our commitment to offering holistic healthcare solutions to Indians,” said Laxmikant Palo, CEO, PPHF
“It is vital that Rare Diseases are brought to the forefront of healthcare discussions. One of the pharma industry’s roles should be driving awareness of these conditions, and building robust, sustainable collaborations and partnerships that ensure better health outcomes for Rare Disease patients. Gaps in the Rare Diseases ecosystem can be bridged when key stakeholders – including our industry – work together in this way to positively impact patient lives with improved standard of treatment and care,” Mr. Philip Towle, Head of Access Markets Transformation, ICMEA, Takeda, said.
PPHF organizes virtual consultation to deliberate on the roadmap of Rare Diseases in India
Besides the government officials from states and Union Territories such as Chandigarh, Punjab, Jammu & Kashmir, Rajasthan, and U.P., the event witnessed the participation of 100 -150 distinguished personalities from academia, industry bodies, research, alternate ministries, neighbouring states, PSUs, judiciary, NGOs, civil societies, PAGs etc.
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