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+91 - 87708-69677
+91 - 88390-72450
Reg. Office Address
Sethi Nagar, Ujjain MP 456010
Our Registration No.
07/33/01/15656/19
Board Members
Our Passionate Leaders
Our Board brings together passionate leaders, medical experts, and social changemakers committed to achieving a Thalassemia & Sickle Cell Free India. With diverse expertise in healthcare, policy making, community, they guide our mission with vision, integrity, and dedication.
Few words from
Our Esteemed Members
मात् नर्मद हर जीवन भर.. with the blessings of Maa Narmada, our organization has been continuously trying to prevent diseases like thalassemia and sickle cell since September 2018. We have been continuously demanding the government administration to make a law to stop it and have also been requesting all gynecologists to stop it. Every pregnant woman must get a thalassemia HbA2 test done in the first month itself. I request all of you with folded hands that instead of being afraid of this disease, try to understand it.
Also, all of you are requested that before marriage, every boy and girl must get their thalassemia HbA2 test done and provide a healthy and happy life to their future children.
।। Now it is your decision whether you want to give your child a milk bottle or a blood bottle
Pt. Vikas Shukla
State President
The effort is to awaken people from all sections of society and to eradicate Thalassemia disease from its roots. For this our organization Thalassemia Janjagran Samiti MP is working on prevention and protection in the society. For prevention, efforts are on to make the coming generation Thalassemia free by organizing Thalassemia Minor camps, awareness camps in social organizations, schools and colleges. Thus for the protection of Thalassemia patients, efforts are being made continuously to organize HLA Camps, Conferences and BMT.
सोच है बदलाव की, मानव समाज के कल्याण की आओ मिलकर नवजीवन लाए, मानव समाज को थैलेसीमिया मुक्त बनाएं |
सोच है बदलाव की, मानव समाज के कल्याण की आओ मिलकर नवजीवन लाए, मानव समाज को थैलेसीमिया मुक्त बनाएं |
Satyendra Singh Rathore
Patron/Convener
Few words from
Our Esteemed Doctors
Must know...
1. Thalassemia, sickle cell is a hereditary disease.
2. It is a blood disorder.
3. This disease spreads from parents to children.
4. This disease is seen in poor as well as rich families.
5. This disease has been seen in every society.
6. Due to this disease, the family and parents go through financial and mental problems.
7. The easy thing is that the symptoms of this disease can be detected in parents through blood test.
8. Those parents who have symptoms of this disease, it is necessary to detect the disease in children in the womb itself.
9. Doctors have an important role but with the contribution of social service organizations, staff officers, Anganwadi workers, Sarpanch, the society can get rid of these diseases.
1. Thalassemia, sickle cell is a hereditary disease.
2. It is a blood disorder.
3. This disease spreads from parents to children.
4. This disease is seen in poor as well as rich families.
5. This disease has been seen in every society.
6. Due to this disease, the family and parents go through financial and mental problems.
7. The easy thing is that the symptoms of this disease can be detected in parents through blood test.
8. Those parents who have symptoms of this disease, it is necessary to detect the disease in children in the womb itself.
9. Doctors have an important role but with the contribution of social service organizations, staff officers, Anganwadi workers, Sarpanch, the society can get rid of these diseases.
Dr. Sharad Jain
M.D. Professor and H.O.D. Pathology and Transfusion Medicine, S.S. Medical College, Jabalpur. Consultant Jabalpur Blood Bank
Dear friends
I feel proud and fortunate to be a part of the Thalassemia Janjagran Samiti and their annual program. Thaillasemia Janjagran Samiti has proved to be a boon for children and families suffering from sickle and thalassemia. It is a unique example of how a small initiative can take the form of a large public cooperation program over the years. As I have come to know, many new excellent works are being done by the Samiti. Such as creating an ecosystem for laser scale testing, HLA testing and bone marrow transplant. I am extremely happy with your work and I express my gratitude to you for giving me the opportunity to become a small participant in this great work, I wish that you give more scope and speed to this great work so that it becomes a mass movement and we continue to fulfill the duty of humans by giving new life to many children in the form of God. Best wishes...
Activist, Thalassemia Janjagran Samiti, Madhya Pradesh
Dr. Vikesh Agarwal
Professor and Head Department of Pediatric Surgery Japanese Medical College
Regards to my thalassemia family and beyond words fall short of when I try to write something about the courage and gumption you all display when it comes to managing this disease on your own. I congratulate the office bearers and organisers of thalassemia jan jagran samiti for organising this conference so that we, as doctors, can be a part of your daily race of living with the disease and be the supporting pillars of medicine when it comes to managing the disease situations. Science evolves, medicine changes, and treatments get better by the day, but when u race against the genetics, its always a tough and long battle, the same is true for sickle cell and thalassemia. We, as clinicians have witnessed a long battle against thal and sickle, waging on since centuries and how the modern scientific tools have tried to make life easier and manageable living with the disease, but one natural element to this struggle can never be replaced, the need for human blood for transfusion. The struggles and zest of thalassemia jan jagran samiti have made it easier for many families to get procure it via donation from many like us, but it still remains a large battle for most of us. My honest and sincere regards to those who donate it willingly and help the children breathe in peace and heartiness.I feel proud to be a part of this initiative and as a small motif where we could bring some change to the lives of already ailing children and families. Such initiatives prove that the element of humanity goes way beyond what we can imagine and perceive. I bless those who are ailing with the disease and pray to the almighty to give strength to all of us to manage this disease in best of our capacity. Thanks & Regards
Dr. Sunit D.P. Lokwani
M.D., D.M. (Medical Oncologist) Kokilaben Hospital, Indore
Dear fellow citizens, I would like to congratulate the office bearers of Thalassemia Janjagaran Samiti, MP for planning and successfully organising 1st National Thalassemia and Sickle Cell Conference. The conference aims to bring all the relevant stakeholders including the parents and patients, social workers, clinicians and policy makers on one platform so that all the present gaps sin in successful implementation of effective care to thalassemia and sickle cell disease patient's in need can be fulfilled. As a native of Sagar, MP and an alumni of NSCB Medical College, it's a matter of pride and privilege to be a part of this initiative. Over the past decade we have worked extremely hard to provide state-of-the-art curative solution for both thalassemia and sickle cell disease. During this period we have developed very innovative protocols to treat these patients with a success rate which is best in the world. We feel proud and honoured when these protocols developed by us are used across the globe. As a clinician, I extend my full commitment and support to the cause of treating and eradicating thalassemia and sickle cell disease in India.l sincerely hope and pray that this noble initiative by Thalassemia Janjagran Samiti will be a foundation stone to the great work which lies ahead.Together we can, together we will, WIN OVER THALASSEMIA & SICKLE CELL DISEASE
Dr. Gourav Kharya
Clinical Lead, Appolo Center for BMT & Cellular Therapy Senior Consultant, Pediatric Hematology, Oncology & Immunology
It's important for everyone to know his or her Thalassemia status. Timely intervention can prevent birth of a Thalassemic child. As rightly said prevention is better than cure.
Dr. Vikas Dua
Pediatric Hematologist in India - Pediatric Oncologist in Delhi BMT Specialist Pediatric - Cancer, Thalassemia Fortis Hospital, Gurugram
Thalassemia Janjagran Samiti, MP is organising the 1st National Thalassemia and Sickle Cell conference. It is a matter of great joy for all of us that this conference will bring patients and doctors on the same platform to improve the care.
Will take this opportunity to discuss regarding the transition of care from Pediatric to adult team. With increased survival in chronic diseases, newer long-term complications and disabilities have emerged requiring focused attention. For example, earlier in thalassemia patients, iron overload related cardiomyopathy was very common but now its incidence has decreased. And now, patients are at greater risk of atherosclerotic cardiovascular disease due to prolonged survival and associated impaired glucose metabolism, which is dealt by adult physicians. Timely transfer of care to adult physicians can help in treating such problems in a better way. Development of up-to-date and detailed written transition plans, at appropriate time span, in collaboration with young people and their families, is the need of the hour.
Dr. Neha Rastogi
Senior Consultant Dept of Pediatric Hematology, Oncology & BMT, Medanta Hospital Gurugram
A bone marrow transplant (BMT) is a potentially life-saving treatment for individuals with Thalassemia Major, a genetic blood disorder characterized by the inability to produce enough hemoglobin, leading to severe anemia. BMT involves replacing the patient's unhealthy bone marrow with healthy donor marrow, which can produce normal red blood cells.
There are three main types of bone marrow transplant options for Thalassemia Major patients-
Matched Related Bone Marrow Transplant (MRD): In this type of transplant, the donor is typically a close family member, such as a sibling, who is a suitable match in terms of human leukocyte antigen (HLA) compatibility.HLA compatibility is crucial to reduce the risk of graft-versus-host disease (GVHD), a complication where the donor's immune cells attack the recipient's tissues. MRD offers the highest success rate and the lowest risk of complications among the three types of BMT.
Matched Unrelated Bone Marrow Transplant (MUD): If a compatible family donor is not available, Thalassemia Major patients can opt for a matched unrelated donor, typically found through national or international donor registries. Compatibility is determined by HLA matching, and it may be more challenging to find a well-matched unrelated donor. MUD BMT has a lower success rate compared to MRD but is a viable option when family donors are not available.
Haplo-Identical Bone Marrow Transplant: Haplo-identical BMT involves using marrow from a partially matched family member, often a parent, who shares only half of the HLA markers with the patient. This type of transplant has become more feasible due to advances in transplant techniques, such as post-transplant cyclophosphamide and TCR alpha/beta depletion, which helps control GVHD.Haplo-identical BMT is a valuable option when fully matched donors are not accessible.