World Hemophilia Day 2022 Conference

Hemophilia Federation (India) (HFI), an apex organization working on a mass level for the welfare of the Persons with Hemophilia (PwH) in the country, recently hosted a day-long conference in association with the Ministry of Family and Welfare at Hotel Inn, Aero City.

The Chief Guest at the event was Hon'ble Shri Arjun Ram Meghwal, MoS (PA&Cul), GOI. Addressing the attendees said, “Hemophilia Federation India is doing a great job by bridging the finest medical professionals together at “INITIATIVE ON HEMOPHILIA CARE VI CONFERENCE 2022”.

Hemophilia - Causes - Treatment - Genetic Testing - Support Groups
Hemophilia is a rare single gene, X- linked disorder, which tends to run in families.

‘World hemophilia day 2022 conference is held to find the best solution and discuss the policy level changes required for hemophilia.’

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Hon'ble Sh. Mohammed Faizal P.P, MP, Lakshadweep, NCP, and Hon’ble Sh. Harsh Mangla, IAS, Director, NHM, MoH&FW also marked their presence at the conference speaking about the new policies and steps taken by the Government to make the best services available and create awareness about rare diseases in India.

World Hemophilia Day is one of our main initiatives which is observed globally in 140 countries. The more we engage on this day, the greater will be the opportunity for the Hemophilia Community to advance its cause.

The Health Ministry is providing complete support to HFI in pursuit of comprehensive Hemophilia care. It has come a long way but has a long way ahead. There are certain hurdles like our identification is low. Huge lack of procurement. Uneven distribution. Procurement possesses, which can be addressed by having a good hemophilia policy at the state and central level.

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World Hemophilia Day focus is to raise awareness and bring hemophilia and other inherited bleeding disorders to the attention of policymakers.

Remarkably, the integration of the Hemophilia Federation (India) with the Health Ministry in the last four programs was highly successful as Hemophilia could receive recognition.

The federation has been raising the voice of the Hemophilia Community for 39 years since its inception in 1983. Through this initiative, it aims to engage with the Health Ministry and other stakeholders concerning creating awareness, finding executable solutions and promoting comprehensive care for Hemophilia patients at local, regional, and national levels.

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An international workshop was held in Bangalore in February 2018 to discuss about the current status of prevalent blood and bleeding disorders in India.

The “Initiative on Hemophilia Care VI Conference” held focussed discussions on New Treatment options in Hemophilia, the Role of WFH- Humanitarian Aid, Access to Optimal Care, State Specific Discussions on procurement, and comprehensive care, and Conundrums in Hemophilia Care in India led by thought leaders.

In addition, prominent doctors, hematologists, physiotherapists, and hemophilia caregivers from various medical colleges & hospitals in the country are also participating.

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The event was supported by leading pharmaceutical companies - Pfizer, Roche, Novo Nordisk India Pvt. Ltd., and Grifols.

Source-Medindia