The Arjan Vir Foundation
How one mother created a much needed bone marrow registry in India
The Arjan Vir Foundation was set up in 2017 by Harsimran Rana (Simi), Arjan’s mother. The foundation’s mission is to build the largest stem cell donor registry in India, so anyone suffering from blood cancer or 70 other similar disorders would never have to lose their life for lack of finding a matching donor.
One of the greatest challenges during Arjan’s time in hospitals was locating matching bone marrow donors, even while his family diligently worked with the World’s Marrow Association (WMDA is the administrative office of WMBT- Worldwide network for Blood and Marrow Transplantation). Simi knew that no family should be challenged with such a labored effort while nursing a sick family member, as she worked tirelessly through this system to help Arjan, which sadly couldn’t yield results needed to save his life.
It was Arjan’s wish to help others with the same challenges he faced while he wrestled with his disease, believing that this would be the good he could bring to the world. Simi is now facilitating this wish to keep Arjan’s memory alive.
The Challenge of Matching
Simply stated, in order to become a donor, your blood must first be identified and tested through a process of HLA typing of the DNA. This testing is done mostly in the USA or Germany. Then the data is passed along to the World Marrow Donor’s Association which is a recognized body and all world registries are members of WMDA, and registered donors can stay in their registry until called upon up to age 60. The testing itself is a very simple and painless process, and the actual donation does not come into play unless a match is established. The match is made more effective by a match in the ethnicity of the donor and the patient as well, making this a much needed registry for patients that are Indian or of Indian origin anywhere in the world.
Simi explains the process is challenging and expensive for patients seeking transplants for families, but especially for families living abroad. She wondered how she could improve the matching process locally in India, so she could close the gap between patients and donors.
She established an impressive goal of creating a national registry for India, which she is working diligently to establish given the global population of people of Indian origin. This gargantuan effort would help expedite the matching process, and it would ultimately save lives.
A Call to Arms
Simi has been running a grassroots campaign to encourage people from India to become donors themselves, as there is only a 25% chance that someone in your family can be a donor if an individual becomes sick. Leukemia is curable in children and young adults who can get the transplants they need in a timely manner, and it strongly affects northern India. Also, there are more than 70 other disorders that can be alleviated through stem cell transplants, including Thalassemia.
Blood and stem cell donations save lives, and is very safe for the donor. With decades of success, no donor has been adversely affected by contributing under the supervision of doctors and supporting foundations. Spreading the word is key to registering more donors.
Since its inception, the Foundation today has grown to become an International stem cell donor registry, a member of WMDA, ION; and certified 12(a) & 80(g) by the Govt. of India.
A Great Start
The Arjan Vir Foundation has created successful awareness programs and registration drives, and the response has been very supportive. Today, it has registered almost 5,000 voluntary stem cell donors and counting. Though they face many challenges such as lack of awareness, and access to testing facilities, the foundation is raising funds to access world laboratories for HLA typing, a specific requirement for successful stem cell matching.
Sourcing stem cell donors from India is an opportunity that can’t be missed, however, due to lack of awareness, testing facilities and a shortage of funds, the Foundation is working towards raising funds to leverage world laboratories for HLA typing – which is a mandatory criterion for stem cell matching, and thus a good stem cell transplant.
With the database of registered donors growing, the Foundation was faced with the challenge of manually finding a match every time a request came in, which is at least once a day if not more.
Saberpoint embarked on a relationship with the Arjan Vir Foundation to streamline and optimize all the life saving donor data being collected, by transitioning from Excel spreadsheets to a searchable database – that can find matches across the HLA data that is managed for each donor. Knowing this, it was important to structure the solution to be:
- Scalable and capable of growing with the registry, especially given the volume of new donors that the Foundation is signing up.
- Secure enough to ensure privacy of the donor information and all the data being managed by the Foundation.
- Robust enough to support the searches across 10 data points that need to be a match for a successful donor.
- Flexible, with the ability to support customized communication with registered donors.
Getting in Touch
To get in touch with the Arjan Vir Foundation, feel free to use the contact information below, and a team member will be happy to respond:
General Queries: firstname.lastname@example.org
Helpline No: +91 7087575711
Additionally you can use the web form at: