The QutubMinar Turns Red for World Hemophilia Day
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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.arora@shire.com 9811237987
Vikash Goyal: vikash@hemophilia.in9845100122
Mukesh Garodia: mukesh@hemophilia.in 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).
About Shire
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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