Wednesday, July 15th, 2020

More than 70-100 million people are suffering from rare diseases

 

 

  • In India, more than 70-100 million people are suffering from rare diseases, of which treatment options are available for ~450 conditions
  • Rare Diseases disproportionately impact children: 50% of new cases are in children and are responsible for 35% of deaths before the age of 1 year
  • As February 29 is rarest of days, it is marked as the International Rare Disease Day.
  • Diagnosis remains the critical challenge for timely intervention

 

 

 INVC NEWS       

New Delhi, 

India is grappling with the challenges posed by rare diseases. The absence of a rare disease policy, low disease awareness amongst patients and lack of accessibility to specialists are critical factors that make the rare disease patients furthermore vulnerable.

 

The most common rare diseases identified in India are Haemophilia, Thalassemia, Sickle-cell Anaemia, Primary Immunodeficiency, Lysosomal Storage Disorders such as Gaucher Disease, Fabry Disease, Hunter Syndrome and Pompe’s Disease. 

 

To celebrate Rare Diseases Day, Takeda, a global, values-based, R&D-driven biopharmaceutical company pledges to drive increased awareness around rare diseases in India through its Indian entity. The company is committed to support faster diagnosis and better access to treatments for patients with rare diseases.

 

Speaking on the occasion of Rare Disease Day, Vineet Singhal, General Manager and Country Head, Takeda India, said “As a company, we are committed to serve patients suffering from rare diseases like Hunter’s syndrome, Gaucher and Fabry and support them in their disease journey to ensure improved quality of life. We intend to leverage and replicate curated initiatives and global best practices in India for the benefit of the patients.”

 

With a legacy of nearly 239 years, Takeda has established best practices in the rare disease space across the globe. Access to Medicine (AtM) is one such strategy that aims to address the broader structural barriers that prevent patients in underserved communities from receiving the care and treatment they need. The Access to Medicine Foundation and The Access to Medicines Index recognised and ranked Takeda at number five in 2018, where Takeda was also recognised as the biggest upward mover, moving up 10 places to rank number five.

 

Gopal Agrawal, Head Market Access, Patient Advocacy and Patient Services, Takeda India, said: “As a part of the global community, Takeda has focused its efforts and approach to Access to Medicines (AtM) for the patients suffering with rare diseases. We concentrate our efforts to serve and support the patients through numerous initiatives. We engage with patient bodies, not-for-profit organisations, industry bodies and others to support the interest of patients.”

 

The company believes access to healthcare and medicines should be universal by being accessible and available to the Patients across the country. Takeda is committed to help strengthen the healthcare systems in a sustainable way.

 

Dr Sandeep Arora, Medical Affairs Head, Takeda India, said: “There are significant unmet medical needs in the management of rare disorders in India, and it is imperative that all stakeholders such as treating physicians, health-care providers, policy-makers and patient groups come together to ensure timely diagnosis and intervention. It is important to raise awareness about the treatable rare diseases so that patients diagnosed with such conditions can access early treatment and have better outcomes. With focus on patients, Takeda runs specific charitable access programs and patient assistance programs to help get access to treatment and ensure they lead near normal lives.”

 

As part of International Rare Disease Day, Takeda globally has launched "Constellation of Rare Stars" to honour patients, families, caregivers, health care professionals and community members who have helped to “Reframe Rare.”

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