We are students from School of Inspired Leadership, Gurgaon currently pursuing MBA and volunteering with an NGO called Genebandhu. We aim to bring about a change in the society, standing by the core values of the institute. Being associated with Genebandhu reinforces empathy and compassion within us, inspiring to contribute to the well-being of the society.
Genebandhu, a Not-For-Profit Organization in New Delhi, aspires to eradicate the fear of blood disorders by creating an Indian Stem cell donor database. This bridges the gap between voluntary stem cell donors and the patients in need of stem cell transplant from matched unrelated donors.
What do we do?
We spreads awareness about stem cell transplants, helps patients and their families find potential donors and also supports the post-transplant recovery of patients. Studies show that the genetic pool of Indians is conserved and hence there is a higher probability of getting a match within a pool of similar country origin. Also, if a donor is found within the country, the cost of stem cells transplant drastically reduces. This initiative towards creating an Indian registry of stem cell donors will help in spreading awareness about the technology (stem cell transplantation) involved in elimination of the alarming blood disorders, leukemia, lymphoma, and developing unity across nations and across religions and galvanizing the essence of selflessness among people. Our ultimate objective is to create an efficient stem cell registry in the world in order to help the needy blood cancer patients who are in need for a stem cell transplant.
- 1998–> Started as the ‘Safe Blood Organization’
- 2012–>Established as the first and only stem cell donors’ registry in North India
- 2013 —>3rd Matched Unrelated Donor (MUD) Transplant
- 2015–>Registered under the Societies Registration Act, 1860
- 2017 —>25 MUD Transplants 127 Camps
- Certified member of the National Marrow Donor Programme
- Present —> 11,000 Registered Donors and 6,000 Typed Donors
- Number of HLA typing remaining – 4000 samples remaining
This campaign is in aid of raising funds for HLA typing. Our database holds 6000 HLA typed registered donors with still 4000 donor samples to be HLA typed. The cost of HLA typing is $55 due to our tie-up with LabCorp USA. Presently we are able to carry out HLA typing for only 1 out of 2 donors who register with us. We need your support to accelerate the growth of our registry.
What is HLA typing?
Human leukocyte antigen (HLA) typing is used to match patients and donors for bone marrow or cord blood transplants. HLA are proteins -- or markers -- found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not.
Half are inherited from your mother and half from your father, so each brother and sister who shares the same parents as you has a 25% chance (1 in 4) of being a close HLA match. Extended family members are not likely to be close HLA matches. But about 70% (7 out of 10) of patients who need a transplant won’t have a fully matched donor in their family. A close match between a donor’s and a patient’s HLA markers is essential for a successful transplant outcome. The remaining 70% chance of finding a match are 1 in 20,000.
We have limited resource mobilization skills locally, so instead we wait for international donors to approach them. Current donors may shift priorities and withdraw funding. The NGO might suffer from a general lack of project, organizational and financial sustainability.
- Number of HLA typing remaining – 11,000 samples remaining
- Expected number of HLA samples to be tested – 100 samples
- Cost per HLA typing - $55 / Sample
- Funds required – Rs 3,57,500