Towards a Hemoglobinopathies-Free India

Hemoglobinopathies Free India Summit 2026

Saturday 5 September 2026 · Radisson Blu, Ambedkar Veedhi, Bengaluru

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A $100,000 open-source system helped cure 112 children at rich-country survival odds. Hospitals across India, Pakistan and Italy pooled data on one shared platform: 2,400 patients registered, 1,600 were HLA-tested and 112 were transplanted, with 84% thalassemia-free survival among the 75 lowest-risk cases. View the transplant data
Cure · Bone-marrow transplant · 2014 Agarwal R, Sedai A, Dhimal S, et al. J Am Med Inform Assoc. 21(6):1125–1128, 2014.
One drug swap cut a common post-transplant infection by more than two-thirds. CMV reactivation affected 43 of every 100 children on a thiotepa-based regimen (n=30), against 13 of every 100 on an ATG-based regimen (n=51). View the transplant data
Cure · Bone-marrow transplant · 2017 Faulkner L, Uderzo C, Khalid S, et al. Blood Adv. 1(13):792–801, 2017.
1 in 16 “perfectly matched” donors weren’t a real match. Standard blood tests declared these siblings and parents matched; deeper genetic testing found that one donor in every sixteen was actually mismatched. View the transplant data
Cure · Donor matching · 2017 Agarwal R, Kumari A, Sedai A, et al. Biol Blood Marrow Transplant. 23(9):1592–1596, 2017.
A $200-a-month system flagged over half of all iron-medicine dose changes. Across 5 clinics, 521 of 983 chelation-dose adjustments — 53 in every 100 — were triggered by system alerts rather than initiated by a doctor. View the centre data
Management · Day-care treatment · 2019 Agarwal R, Sedai A, Ankita K, et al. JMIR Med Inform. 7(1):e9291, 2019.
Before 2000, a child with severe thalassemia had roughly a coin-flip’s chance of survival. Survival by birth period rose from 29.4% before 2000 to 84.2% in 2000–2004, 87% in 2005–2009, 93.7% in 2010–2014 and 98.9% in 2015–2018. View the centre data
Management · Long-term survival · 2020 Dhanya R, Sedai A, Ankita K, et al. Blood Adv. 4(7):1448–1457, 2020.
A donor mismatch raised rejection risk more than tenfold. Among half-matched (haploidentical) transplants, 56 of every 100 were rejected where a donor-specific antibody or a host-versus-graft HLA mismatch was present, against 5 of every 100 where neither was. View the transplant data
Cure · Bone-marrow transplant · 2020 Marwah P, Soni R, Ramprakash S, et al. Bone Marrow Transplant. 55(9):1824–1828, 2020.
A swollen spleen made this transplant a coin flip. Under the old plan (2013–2016), 55 of every 100 transplants were rejected; after adding one medicine at a higher dose from January 2017, 7 of every 100 were. View the transplant data
Cure · Bone-marrow transplant · 2020 Ramprakash S, Raghuram C, Marwah P, et al. Biol Blood Marrow Transplant. 26(10):1886–1893, 2020.
85%+ cure rates, delivered for a tenth of the usual price. Pooled results from paediatric transplant centres across middle-income countries, 2009–2020: an 85%-plus cure rate in low-risk cases, a $15,000 median cost per transplant, and $100,000 to build a four-bed unit. View the transplant data
Cure · Programme design · 2021 Faulkner L, Verna M, Rovelli A, et al. Bone Marrow Transplant. 56(3):536–543, 2021.
20 high-risk transplants, zero dangerous reactions. Of 55 ABO-mismatched patients, the 20 given a pre-transplant donor-blood protocol included 12 with mild, reversible hemolysis and none with a severe or dangerous reaction. View the transplant data
Cure · Transplant safety · 2021 Mehta P, Ramprakash S, Raghuram C, et al. Ann Hematol. 100(8):2071–2078, 2021.
Routine weekly testing didn’t predict who would survive. Across 317 children in 3 hospitals over 5 years, colonization with resistant bacteria made no measurable difference to outcomes — the colonized and non-colonized groups had the same survival. View the transplant data
Cure · Antibiotic stewardship · 2022 Dhanya R, Agarwal R, Ramprakash S, et al. Transplant Cell Ther. 28(3):170.e1–170.e7, 2022.
A lab ratio measured at harvest predicts a dangerous transplant complication. Serious graft-versus-host disease affected 37 of every 100 children where marrow quality was low (BMQI below 0.9), against 12 of every 100 where it was high (BMQI above 1.0). View the transplant data
Cure · Marrow quality · 2023 Agarwal R, Dhanya R, Sedai A, et al. Transplant Cell Ther. 29(11):711.e1–711.e6, 2023.
A pill freed some patients from transfusions — but not without a cost. Of 482 patients treated with hydroxyurea, 65 achieved full transfusion independence, and 15 of those 65 responders (23%) developed heart complications despite improving iron levels. View the centre data
Management · Medicine · 2025 Sevanthini BR, Hegde S, Sridhar T, et al. Br J Haematol. 207(5):2196–2199, 2025.
Screening 34,647 pregnant women prevented 44 births of a severe blood disease. Across five Indian states in one year, 2,268 carried the gene, 339 were at-risk couples, 246 pregnancies were tested and 65 were found affected — at ₹550 (about $6.50) per family screened, or one prevented birth per 787 families. View the screening data
Prevention · Prenatal screening · 2025 Agarwal RK, Dhanya R, Parmar L, et al. Indian J Med Res. 161(5):441–448, 2025.
How do you know if a prevention programme is actually working? This paper proposes two yardsticks rather than reporting one study’s results: a Screening Index (at-risk women reached × 100, divided by at-risk women in total) and a Prevention Index (women enrolled per birth of a severe blood disorder prevented). View the screening data
Prevention · Measurement science · 2025 Agarwal R, Periyavan S, Trivedi D, et al. Front Public Health. 13:1587738, 2025.
Prenatal diagnosis reached 82 districts — most of them rural. A three-step testing model carried 81,139 HPLC screening tests through to 802 genetic confirmations of both partners and 495 prenatal diagnosis procedures, with a 0.6% procedure complication rate. View the screening data
Prevention · Prenatal diagnosis · 2026 Sridhar T, Anusha S, Periyavan S, et al. Blood Glob Hematol. 2:100103, 2026.
Science
Compassion
Hope
Future
1,101
Transplants to date
696
Bengaluru, since 2015
405
Ahmedabad, since 2017
89.6%
Thalassemia (987 of 1,101)
8.7 yrs
Median age at transplant
83.9%
Alive and doing well

Programme data as of July 2026. “Alive and doing well” is the transplant programme’s own reported status at last follow-up, not a formal survival analysis.

Journey to 1000

2015
The first transplant
The programme begins in Bengaluru. Ten transplants in its first year.
2017
A second centre opens
Ahmedabad joins the programme. 88 transplants to date across both cities.
2020
The pandemic year
Volume falls to 39 transplants, down from 83 the year before — but the programme never stops.
2022
A hundred in a year
For the first time the programme performs more than 100 transplants in a single year. 465 to date.
2025
The strongest year yet
207 transplants in twelve months, the programme’s best. 934 to date.
2026
The 1,000th beginning
The programme crosses one thousand transplants — 1,101 to date, and counting.

Watch

Films from the programme

A Journey of Hope (short)

Cure2children and DKMS: Breaking barriers, saving lives (short version)

Cure2children and DKMS: Breaking barriers, saving lives (full version)

Sriharsha's story

Shreya's story

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Scientific Programme

Four themed sessions, from prevention to cure, across a single day.

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Speakers

Clinicians, researchers, policymakers and families shaping the journey.

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Venue & Travel

Radisson Blu, Ambedkar Veedhi, Bengaluru — how to find us.

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