The QutubMinar Turns Red for World Hemophilia Day
• Hemophilia Federation (India) and Shire India join hands to turn the spotlighton Hemophilia and its management
• About 130,000 patients are estimated to be suffering from Hemophilia who need immediate and holistic care and treatment to lead a normal life
New Delhi, 16th April 2018: Hemophilia Federation (India), a non-profit self-help organization working for people with Hemophilia, and Shire India, a leading global biotechnology company focused on serving people with rare diseases, came together in solidarity to launch a unique initiative to turn the spotlight on Hemophilia and its management. Delhi’s iconic monument, QutubMinar was lit up with red lights as part of the World Hemophilia Day campaign to increase awareness and understanding of this genetic disease in the society. Hemophilia afflicts 1 in 10,000 people and with the right treatment and holistic care, these patients can potentially lead a near-normal life.
A panel discussion involving Mr. Vikash Goyal, President, Hemophilia Federation (India), Mr. Mukesh Garodia, Vice–President – Development, Hemophilia Federation (India), Ms. Vinita Srivastava, National Consultant & Coordinator, Blood Cell – NHM, MoHFW, Dr. Tulika Seth, Professor Hematology, All India Institute of Medical Sciences (AIIMS), Dr. Brigadier Ajay Sharma, Professor & Head, Department of Hematology & Center for Stem Cell Transplantation & Research, Sir Ganga Ram Hospital and Mr. Vineet Singhal Country Head, Shire India was organized in the backdrop of QutubMinar that defined the vision of managing Hemophilia, providing much-needed hope for thepatients to lead a near-normal life. The panel focused on the topic of improving and sustaining care for people with hemophilia, improving lives by training experts in the field to facilitate early diagnosis; advocating for sufficient supply of quality treatment products; and educating and empowering people with right resources and information to help them live better.
Speaking at the event, Mr. Vikash Goyal, President Hemophilia Federation (India), said, “Till date, Hemophilia Federation (India) has identified over 20,000 children and adults with Hemophilia. However, considering the population of India and lack of awareness among the people this figure may be closer to 1, 30,000 (1.3 lakhs). Therefore, there is a huge need for trained doctors and testing facilities to ensure identification and diagnosis of the people suffering from hemophilia. We are proud to be part of this initiative as we believe that a well-informed society and patients can make a difference in managing the Hemophilia disease conditions. Today is a landmark moment as the stakeholders have come together under the magnificent iconic QutubMinar to mark the beginning of a national commitment to address Hemophilia.”
Dr. Tulika Seth, Professor Hematology, All India Institutes of Medical Sciences (AIIMS) said, “With access to adequate factor replacement, appropriate monitoring and good physiotherapy, all children with Hemophilia can lead productive and pain free lives. It is important to inform the public about this disorder, so that if children develop joint swellings after injury or increased bleeding, the families can come forward for early diagnosis. We need a network of trained health care facilities and providers so that the families do not need to travel far off centers for diagnosis or treatment.”
Also in attendance was Mr. Vineet Singhal, Country Head, Shire India, commented: “At Shire, we have a unique responsibility to champion underserved patient communities and Hemophilia is one of them. The patients with Hemophilia may have a difficult path to diagnosis and access to care and therefore we are focused on building partnerships in such patient communities around the world to empower them with education, expand awareness, enable earlier diagnosis and provide best-in-class high quality & efficacious therapies. Today is an important day for us and we are privileged to be part of this national commitment to raising awareness about Hemophilia.”
Hemophilia is a hereditary genetic blood disorder that impairs the body’s ability to control blood clotting where patients bleed for longer time spontaneously or following an injury. A serious disorder, it puts the patient at risk of his life due to excessive bleeding. The awareness about the disease and its management has been the biggest hurdle behind the inaccessibility of appropriate treatment for patients.
For further information please contact:
Shikha Arora: Shikha.firstname.lastname@example.org 9811237987
Vikash Goyal: email@example.com
Mukesh Garodia: firstname.lastname@example.org 9864023021
About Hemophilia Federation (India)
HFI is the only non-profit, self-help organization working for the welfare of people with Hemophilia. With the network of 90 Chapters spread across the country, we aim to reach out to more and more PWH and provide quality care, affordable treatment, educational & psycho-social support and economic rehabilitation. We have so far been able to identify more than 16,000 hemophiliacs across the country out of estimated 1.2 lacs (i.e. 1 in every 10,000 population).
Shire is the global leader in serving patients with rare diseases. We strive to develop best-in-class therapies across a core of rare disease areas including hematology, immunology, genetic diseases, neuroscience, and internal medicine with growing therapeutic areas in ophthalmics and oncology. Our diversified capabilities enable us to reach patients in more than 100 countries who are struggling to live their lives to the fullest.
We feel a strong sense of urgency to address unmet medical needs and work tirelessly to improve people’s lives with medicines that have a meaningful impact on patients and all who support them on their journey.
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