In an initiative aimed at reducing financial barriers faced by families seeking curative treatment for beta thalassaemia major, DKMS Foundation India, a non-profit organisation dedicated to the fight against blood cancer and other blood disorders, has announced free HLA (Human Leukocyte Antigen) typing for children below 12 years of age suffering from the inherited blood disorder across India.
The announcement was made ahead of World Thalassaemia Day — observed on May 8 — as part of the organisation’s efforts to improve access to stem cell transplantation and help children find suitable donors. Beta thalassaemia major is a condition that often requires lifelong blood transfusions unless treated through stem cell transplantation.
To address gaps
Elke Neujahr, Global CEO, DKMS Group, said the programme was designed to address gaps in affordability and access to transplantation.
“Through initiatives such as free HLA typing for children below 12 years suffering from transfusion-dependent beta thalassaemia, we aim to ease the burden on families navigating the transplant journey,” she said.
Under the programme, DKMS will conduct awareness and screening camps in partnership with NGOs and transplant centres across the country. During these camps, patients and their family members will provide buccal swabs (a non-invasive method used to collect DNA or oral cells from the inner cheek lining) for HLA typing to identify potential family donors.
The samples will be analysed at DKMS laboratories in Germany and matching reports will be shared with families. If no suitable donor is found within the family, DKMS will facilitate free unrelated donor searches through its registry network.
Access to transplant programme
Patrick Paul, executive chairman, DKMS Foundation India, said the organisation’s Access to Transplant programme sought to support patients through guidance, donor searches and financial assistance for stem cell transplantation.
According to doctors, India sees more than 10,000 children born with thalassaemia every year. However, finding matched unrelated stem cell donors remains difficult because of the limited number of registered donors from Indian populations.
How to register
To register as a potential stem cell donor, individuals must be healthy adults between 18 and 55 years of age. Registration requires filling out a simple consent form. A swab of the inside of the cheeks is taken to collect the tissue cells, which are then analysed for HLA. The potential donor is then listed anonymously on the international search platform for matching stem cell donors. Eligible individuals can register as blood stem cell donors by ordering a home swab kit at https://www.dkms-india.org/register-now and join the movement to save lives.