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The Hindu
a day ago
- Health
- The Hindu
Bengaluru-based NGO's hemoglobinopathy prevention programme has averted 201 affected births across five States
In the absence of regular screening for pregnant women to check inherited blood disorders in the country, a Bengaluru-based NGO's hemoglobinopathy prevention programme has helped avert 201 affected births across five States. Inherited blood disorders such as thalassemia and sickle cell disease (also known as hemoglobinopathies) inflict lifelong suffering, including repeated transfusions, painful complications, disability, and early death. 1.9 lakh screened In the last four years, the NGO, Sankalp India Foundation, screened over 1.9 lakh women in 81 districts across Maharashtra, Madhya Pradesh, Gujarat, Karnataka, and Andhra Pradesh. It was possible to prevent 201 births with severe hemoglobinopathies. These included 91 sickle cell disease, 76 thalassemia major, 27 sickle-beta thalassemia, and seven other hemoglobinopathies. Proactive measures, including genetic counseling and prenatal screening, enabled families to make informed decisions about continuing or terminating pregnancies based on fetal test results. 28 from Karnataka The 201 births include 28 from Karnataka, 123 from Maharashtra, 12 from Andhra Pradesh, 13 from Gujarat, and 25 from Madhya Pradesh. 'The number of affected births that have been prevented corresponds to the carrier (of mutated genes that cause the hemoglobinopathies but do not have the disease themselves) rates in these States,' Rajat Kumar Agarwal, president of Sankalp India Foundation, told The Hindu on Saturday. Pointing out that the programme is a scalable model of national importance, Mr. Agarwal said, 'As India commits to eliminating sickle cell disease by 2047, this programme offers a working blueprint of how to make that vision a reality.' This impact was only possible because of strong partnerships with National Health Missions in the five States, district health authorities, local health workers, donor institutions, and other stakeholders. It reflects a model of public-private collaboration rooted in equity, trust, and local leadership, he said. As many as 87 centre coordinators and six regional coordinators trained and embedded in the Obstetrics/ Gynaecology departments in district hospitals were at the frontline. 'They counselled parents-to-be, mobilised timely testing, supported prenatal diagnosis, and offered continuity of care with unwavering compassion and clarity,' he added. Hardest decision Couples, who were counselled and tested, said they had no idea they were both carriers. 'Following the genetic testing, terminating the pregnancy was the hardest decision of our lives. But, we were not prepared to see our child suffer lifelong,' said Jayshree and M. Ravi, who were counselled and tested through the NGO at Tumkuru district hospital. 'The programme gave us knowledge and choices to ensure a healthy future for our child,' said Seema and Mahesh from Alirajpur in Madhya Pradesh. Sundar Periyavan, lab director of Sankalp Labs and former Head of Haematology and Transfusion Medicine at NIMHANS, said accurate and timely diagnostics are the lifeline of this programme. Quick and precise 'Every hour counts, and our labs ensure fast, accurate, and actionable results through high-performance liquid chromatography (HPLC). The families receive clear answers when it matters most,' the doctor said. The clinical framework and quality systems of this programme were conceptualised by Lawrence Faulkner, medical director of Sankalp and founder of Cure2Children, Italy, an international haematologist. 'Sankalp's antenatal screening model, grounded in precision diagnostics and community engagement, has transformed the way we approach hemoglobinopathy prevention,' said Dr. Faulkner. (Names of the couples have been changed).
Hans India
08-05-2025
- Health
- Hans India
Sattva Group Partners with Sankalp India Foundation to Launch Blood Donation Drive on World Thalassemia Day
Bengaluru: In a landmark effort to make a meaningful impact on World Thalassemia Day, Sattva Group, one of Bengaluru's leading real estate developers, has partnered with the esteemed Sankalp India Foundation to launch a series of blood donation drives across its IT parks in the city. This initiative is aimed at supporting patients battling thalassemia, a critical genetic blood disorder that necessitates regular blood transfusions for survival. Initiated on World Thalassemia Day, this significant campaign will unfold over the next three months across Sattva's IT campuses in Bengaluru, beginning with Sattva Knowledge Court and Sattva Mind Comp Tech Park. Thalassemia affects the body's ability to produce hemoglobin and red blood cells, making frequent transfusions a non-negotiable part of treatment. Thus, this drive is more than just a collection of blood donations—it's a call to the corporate community to unite and address the urgent need for a stable supply of safe blood. Despite being one of the most common genetic disorders in India, with over 10,000 children born with thalassemia major each year, awareness remains limited. This drive is more than just a collection of blood donations; it's a call to the corporate community to unite in ensuring a stable supply of safe blood for those in need. 'Our partnership with Sankalp India Foundation acknowledges the profound reality that surrounds us—right now, real people in our communities are facing challenges that we can help solve," stated Shivam Agarwal, VP of Strategy Growth at Sattva Group. "We invite all corporate entities within our campuses to join us because countless individuals await critical support—from life-saving blood donations to the fundamental resources necessary for their wellbeing. These are the ongoing realities of people in our community. Corporate India must recognize that our collective strength, when channeled with purpose, can transform lives and create lasting impact. Together, we can bridge gaps and create meaningful change that makes tomorrow better than today for those who need it most' Each blood donation camp will offer pre-donation health checks, enlightening sessions about thalassemia, and expert medical support to ensure a safe and seamless process for donors. Participants will receive educational materials illustrating how one unit of blood can profoundly change lives. 'We are immensely grateful to Sattva Group for their proactive approach in supporting our cause,' said *Rajat Kumar Agarwal, President Sankalp India Foundation. "We are honoured to partner with the Sattva Group for the voluntary blood donation campaign. This collaboration marks a powerful step towards solving one of the most urgent needs of thalassemia care: access to safe, regular blood transfusions. With the support of Sattva Group, we are working to ensure a steady, dependable blood supply for more than 2,500 thalassemia patients across our nationwide network of day care centres. For these children, every transfusion is not just a treatment, it's a lifeline. Every unit of blood donated is a gift of strength, of hope, of life itself. We invite everyone to be part of this movement and stand with these young fighters who battle thalassemia every single day." By donating blood, professionals become part of a movement that extends compassion beyond the workplace and directly supports those battling thalassemia. Together, Sattva Group and Sankalp India Foundation invite the corporate community to participate in this essential initiative.
