Thalassaemia Welfare Association logoThalassaemia Welfare AssociationChennai · Est. 2006
Our Story
“Learn from Yesterday. Live for Today. Hope for Tomorrow.”

— Dr. Revathi Raj

Honorary President, Thalassemia Welfare Association, VHS, Chennai

Home is a place where hearts are woven together, and no family member gets left behind or forgotten. The Voluntary Health Services hospital in Chennai is home to patients with Thalassemia Major and has served the local community with genuine warmth and care for over two decades. This is our story from the heart, and we share our baby steps, our challenges, where we have fallen, and all the success stories with a vision for our future.

In 2006, a group of patient families, volunteers, and physicians came together to support patients with thalassaemia in the blood bank, which provided free units of lifesaving blood transfusions. The centre gradually grew over time from four patients on regular transfusion in 2006 to 199 patients in 2026. TWA is now registered as a non-profit society to help raise awareness on thalassaemia and provide comprehensive care.

Learn from Yesterday

Medical staff and patients at the VHS Thalassaemia Centre transfusion ward, Chennai
Safe transfusion, optimal chelation — the foundation of every patient's care since 2006.

The initial challenge was to provide a safe transfusion, and we invested in leucodepletion filters for all patients and fourth generation ELISA kits for screening. The febrile transfusion reaction rates were low at less than 1%, and alloimmunisation rates and need for splenectomy were reduced to 4.5%. Hepatitis B rates were low with universal vaccination, and all patients received a booster dose every 5 years. Hepatitis C rates were high at 33%, and any patient with a sudden jump in ferritin had a test done for hepatitis C. The newer oral antiviral agents helped clear the virus within 3 months, and all patients got 6 months of therapy with no reactivation, even during bone marrow transplantation. Bone disease was rampant in the young adult population and we started vitamin D replacement every six months and arranged a campaign to donate bicycles for all patients to encourage physical activity. We lost patients due to post-splenectomy sepsis, and all our patients now have a card to start early antibiotics in case of fever or infections. We pioneered innovative methods like using a simple scalp vein set for transfusions to avoid damage to veins in patients on long-term transfusions.

The most important step was to engage with the government for assistance. After several appeals and visits by celebrities and politicians, thalassaemia comprehensive care is now included in the insurance scheme. Our patients today get comprehensive cover from diagnosis, transfusion, chelation, cardiac and endocrine support, and even the curative bone marrow transplantation, completely free of cost!

The centre has three dedicated volunteers and three paid staff. The COVID pandemic challenged the infrastructure, and several patients struggled to continue transfusion and chelation. Despite this, we ensured that medications reached every individual's house and they could complete their transfusions. Our centre was kept open all through the pandemic by our dedicated staff.

TWA volunteers conducting thalassemia carrier screening at a school in Tamil Nadu — students receiving finger prick blood tests
Thalassemia awareness and carrier screening camps in schools across Tamil Nadu.

Live for Today

We have now performed over 300 BMT procedures for thalassaemia patients fully free of cost, including haploidentical BMT through an MoU with Apollo Hospitals, Chennai. The average age of the patients undergoing transfusions is now over 15 years, as all the younger patients have had a successful BMT. We need to engage with young adults and address their concerns regarding higher education, marriage, and sexual health. We are proud to have assisted in the delivery of 9 babies in our thalassaemia cohort.

Prenatal diagnosis is the way forward, and over the last 20 years, we have assisted over 100 chorion villous sampling procedures with an MoU with Mediscan Systems and helped prevent new births. The high prevalence district of Sitteri in Dharmapuri has been covered extensively in our campaigns to raise awareness and prevent new births. Several NGOs now work with the centre, including Annamayil, which provides high-quality food for those coming for transfusion, and Camp Rainbow, who come for Art therapy sessions.

Our volunteers ensure that awareness on testing for thalassaemia is represented in all regional obstetric meetings and conferences.

A young girl in festive clothes celebrating Diwali after a successful bone marrow transplant
Celebrating Diwali after a successful BMT.
Two young children laughing and embracing — thriving after thalassemia treatment and BMT
Prenatal diagnosis and successful BMT — two milestones that change a family's future.

Hope for Tomorrow

The way forward is to network and partner with government and non-governmental agencies to help these families. Our goal is to include thalassaemia testing in all routine antenatal screening followed by genetic counselling. In particular, we provide extended family counselling to prevent births in existing families. The 23 deaths over the two decades were due to sepsis, heart, and liver iron overload. We therefore need to ensure optimal cardiac and liver health to prevent morbidity and mortality. Schemes such as TBSY help with access to early BMT and better quality of life.

The physical, social, and psychological well-being of each and every family is all possible under one roof. Our work has been acknowledged by the government of Tamil Nadu with a medal of honour. We hope to join hands with all partners and cause a ripple effect and heal patients with thalassaemia in our community. We remain grateful to the volunteers who have been donating blood which is the gift of life for our patients. The future is here with gene therapy, and we hope our patients will be able to benefit from this and lead a healthy life.

A teenage thalassemia patient with her father — healthy and thriving after treatment at VHS Chennai
Thalassaemia free survival — the goal that drives everything we do.
Kaplan-Meier survival function chart showing thalassemia-free survival rates at Apollo Chennai through BMT partnership with TWA
Survival function data from Apollo Chennai — evidence of what sustained, quality care achieves.

Watch: Our Thalassaemia Awareness Film

Our awareness film will be published here shortly.

Produced by TWA Chennai — check back shortly.

Partners Who Make This Possible

Over two decades, these organisations have stood with us.

Apollo Hospitals Chennai logo

Apollo Hospitals, Chennai

MoU partner for haploidentical Bone Marrow Transplantation — over 300 procedures performed free of cost.

Mediscan Systems logo

Mediscan Systems

MoU partner for prenatal diagnosis — over 100 chorion villous sampling procedures facilitated over 20 years.

Annamayil

Provides high-quality nutritious food for patients travelling to the centre for transfusion sessions.

Camp Rainbow logo

Camp Rainbow

Conducts art therapy and creative wellness sessions for young thalassemia patients at our centre.

Five Star Business Finance Limited logo

Five Star Business Finance Limited

Corporate donor supporting patient care and programme costs at TWA Chennai.

Rotork logo

Rotork

Corporate donor supporting patient care and programme costs at TWA Chennai.

Patient photographs are shared with the knowledge and consent of the individuals and their families. We are grateful to them for allowing their stories to inspire others.

Make a difference today

Give a child their next month of life.

₹8,500 funds one patient's blood, medicines and tests for a full month.