Moreover, there is a growing burden of blood cancer and blood disorders in the country—every year, over. 108,000 people in India are diagnosed with blood cancer, and over 10,000 children are born with thalassemia major every year. These children need lifelong blood transfusions until they receive a successful stem cell transplant. While there is rising incident of blood cancer and other blood-related disorders, there is a huge gap in altruistic stem cell donation. This gap limits the accessibility to transplants that can give a second chance at life.

One of the challenges in stem cell transplant is finding a suitable stem cell match. For blood donations, the criterion depends only on matching blood types. However, blood stem cell transplant requires a precise Human Leukocyte Antigen (HLA) – tissue characteristics) match. In simple terms, the HLA of the donor should match as closely as possible to the patient— ideally, 10 out of 10 relevant HLA characteristics should match between the patient and the donor. A donor may be related to the patient, such as siblings, parents, or family members. Only approximately 30% of patients find a matching donor within their family. Otherwise, an unrelated person listed on any blood stem cell donor registry anywhere in the world can be the potential match and donor. It is important to note that HLA is influenced by ethnicity and genetics. Finding a match is particularly difficult when we consider India's genetic diversity. Most often, patients rely on international donor registries. This process is expensive and leaves uncertainty within the patient's family, leaving them in distress.

The donor number remains insufficient in India. Limited registry size can significantly impact the patient's survival chance. A limited pool of donors makes it highly unlikely that a suitable donor will match, leaving patients waiting for months or even years. In many cases, the delay is life-threatening: Because diseases like leukemia and aplastic anemia are rapidly progressing without timely transplants. Patients frequently rely on relatives or family for blood stem cell donation, who may or may not be a match always! And seeking treatment abroad is not possible for most as it is financially prohibitive.

Therefore, there is an urgent need to adopt better methodologies to increase donor registrations.

A multifaceted approach is the need of the hour. To dispel myths and encourage voluntary donor registrations, more awareness programs are needed in metro cities, tier 1, 2 and 3 cities, including remote places. Continuous engagement with corporate and institutions such as workplaces, universities, and healthcare institutions will play a pivotal role. This will make organising donor registration drives easier and the registration process more accessible.

Organisations like ours have made efforts to spread awareness among the masses through donor registration drives online and offline, partnering with corporates, educational institutes, potential influencers, and participating in social events, to name a few.

World Rare Disease Day is the reminder of the struggles faced by patients with life-threatening conditions. Immediate action for the blood stem cell donor registry in India cannot be overstated. As awareness grows, participation will increase. India has the potential to move closer to ensuring that more patients do not have to wait indefinitely for a second chance at life.

This article is authored by Patrick Paul, managing director, DKMS Foundation India.