Thalassamia Care Foundation is a unit of Global Research and Welfare Society Bhopal, founded by Shri Omprakash Verma and prominent community leaders served as its board members on 8th December2011. Society is registered under M.P. society registration act 1973. GRWS is a non-stock, non-profit organization which was conceived to assist in achieving its noble mission of providing excellent health care, basic facilities to indigent peoples of India. It serves as a conduit of donations coming from various civic-minded individuals, corporations, foundation and other funding agencies.
About Thalassemia |
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What is Thalassemia
Thalassemia is a genetic blood disorder in which a patient cannot make enough Red Blood Cells and needs to be supplemented with RBC transfusions every 2-3 weeks to stay healthy and to survive. |
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Types Of Thalassemia
Alpha Thalassemia
Minor/carrier/trait : They appear perfectly healthy, however where two carriers decide a family there is one in four chance that their child could inherit their carrier genes and develop Beta Thalassemia Major, one in four of a child being normal and 50% chance of the child also being a carrier. Thalassemia Intermedia : A clinical expression for a condition between Carrier and Major .They often run a hemoglobin of 7-9 g/dl. They need transfusions only at times as their Hb drops with infection or any stress on the body. Especially during pregnancy or leg ulcers(seen with chronic hemolytic anemias ). Thalassemia Major : : In thalassaemia major, red blood cells are destroyed almost as soon as they are produced and the bone marrow cannot produce a sufficient number to replace them. This condition requires intensive medical care, including 2-3 weekly transfusions, Iron chelation therapy by giving desferrioxamine injections or by giving oral chelators. For many years, it was thought that thalassemia major patients were untreatable and would inevitably die at an early age. We now know however , that with proper treatment , patients can lead full and fulfilling lives. |
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Testing For Thalassemia
A SIMPLE Blood Test called Hb ELECTOPHORESIS / Hb A2 will tell you whether you are a carrier or have a trait of thalassemia minor. |
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Organisational structure
Thalassaemia International Federation (TIF) is registered as a non-profit organisation under Cyprus Company Law (Registration number 30576). The Federation is governed by an 18-member Board of Directors (maximum two per country) elected for a term of 4 years. Under the terms of TIF's Constitution, at least 50% of its Board Directors must be patients with thalassaemia. The educational work of TIF is supported by a wide Advisory Panel of national and regional medical/scientific collaborators and patients of international expertise from 60 countries. Headquarters TIF has its headquarters in Nicosia, Cyprus, and is staffed currently with 10 employees. See TIFs Organogram here. |
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Membership
TIF's membership comprises of national thalassaemia and other disease-specific patients' associations, health-related organisations and institutions, pharmaceutical companies, health professionals and interested individuals from around the world. National thalassaemia associations can be: (i) general members - after completion of one year of membership general members can become (ii) voting members (upon approval by the Board of Directors), thus obtaining the right to vote and be voted. (iii) Associate members can be individuals, commercial or professional groups and disease-oriented patients' associations (other than thalassaemia). Application forms and detailed information on membership eligibility as well as benefits can be downloaded here. |
Team Member: |
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Dr. Rashid Merchant, M.D.
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DR. R.S.BALGIR
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ROSHAN B.COLAH (SCIENTIST F, Dy.Director)
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1.Partner with us for a period to offset monthly expenses
2.Sponsor a project
3.Donate to the cause
1.Food stuff and tolletries
2.Linens and clothing
3.Gift for children
1.Counsellors
2.Vocational skill tutors
1.Annual Dinner
Small business development
3.Networking
1.Administrative support
2.Graphic design and copywriting
3.Handyman and Landscaping
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