On June 14th and 15th 2013 Dr. Pietro Sodani will visit for free thalassemia children who plan to do a Bone Marrow Transplant from haploidentical mother to become thalassemia free with no more transfusions.
To make a reservation to meet Dr. Sodani,read here.
We have launched the Cure Thalassemia web site in June 2011,and since then,with just a few pages of useful content,we have had:
The top 10 countries of the visitors are:
Considering that there are about 500,000 living thalassemia patients in the world and that most of them are poor (so without Internet access),the number of visitors is remarkable.
We plan to add more content in the future,since we see that there is a lot of interest for the topic of Bone Marrow Transplant(BMT) to become thalassemia free with no more transfusions.
Since June 2011,Dr. Pietro Sodani (Cure Thalassemia co-founder and scientific coordinator,who has done more than 400 BMTs with Prof. Lucarelli,the inventor of BMT for thalassemia) gives his free professional advice via email to tell patients if they can have a Bone Marrow Transplantation(BMT) to become thalassemia free with no more transfusions.
In november 2011 we reached the milestone of 100 emails answered,and in November 2012 we have cumulatively replied to 1,000 people from all over the world,a very important step for us.
We have answered questions of patients,parents and doctors from 68 countries:
We will keep working with love and passion to give accurate and reliable information to the thalassemia community worldwide.
Eugenio La Mesa’s talk at TEDXBologna 2012 on the social business Cure Thalassemia.
Bone Marrow Transplant(BMT) from matched donor is available since more than 30 years,and it is the main cure available for thalassemia major patients to become thalassemia free with no more transfusions. But only 25% of patients have a matched donor.
The good news is that it is possible to do the BMT even if there is no matched donor,using the mother as the donor. This BMT,called “from haploidentical mother to child with thalassemia”has been invented in 2002 by Dr. Pietro Sodani (Cure Thalassemia co-founder and scentific coordinator).
In our site we have added a page dedicated to this topic,with all the main information,and links to the scientific papers.
We believe this is the future of BMT,because the vast majority of thalassemia patients has a mother in good shape,which is what is necessary to do this BMT.
Listening to the feedback of the worlwide thalassemia community,we have added a new BMT testimonials page,to allow parents and patients who are planning to do a BMT for thalassemia to be able to talk to patients and their parents who have already done a BMT.
We think that this is something very important,because just talking to the doctors might not be enough. Read all the details here.
Thanks to Andy Battaglia for his help and advice on this topic.
We are glad and honored to announce a great partnership with the Thalassemia Patients and Friends forum,the most important online forum for the thalassemia community worldwide,with more than 3,000 active members and 41,000 posts.
Dr. Pietro Sodani (scientific coordinator) and Eugenio La Mesa (chairman),the 2 Cure Thalassemia co-founders,will answer questions and moderate the new area of the forum entirely dedicated to Bone Marrow Transplant(BMT) and Cord Blood Transplant(CBT) both from matched and mismatched donor.
We thank Andy Battaglia, the admin of the forum,for this exciting opportunity to let us give our help and support to families and patients all over the world;we will give as many reliable information as possible on how to be cured from thalassemia,with no more transfusions.
“I find this to be an exciting cooperative effort and am greatly pleased to have an ally in Cure Thalassemia”,says Andy Battaglia.
This is the welcome message of Andy to introduce us to the members of the forum.
Narayana Hrudayalaya (NH) is a 6,000 bedded prominent Indian Hospital chain,the world’s largest heart hospital for children. The Mazumdar Shaw Cancer Centre (MSCC),inside the Narayana Hrudayalaya Multispeciality Hospital in Bangalore,with 1,400 beds is one of biggest cancer center in the world,and has a 14 bed BMT unit.
Cure Thalassemia-Narayana Hrudayalaya/Mazumdar Shaw Cancer Centre
An agreement between NH and Cure Thalassemia(CT) has been signed;CT can use the BMT units of NH and MSCC for its patients who want to do a Bone Marrow Trasplantation(BMT),under the daily supervision of Dr. Pietro Sodani (CT co-founder and scientific coordinator),and with the scientific advice of Prof. Lucarelli, the worldwide authority in the field of BMT for thalassemia.
NH can also use the scientific advice of Dr. Sodani and Prof. Lucarelli for its thalassemia patients,but without a daily supervision.
Furthemore CT,NH and MSCC will work together to
A joint co-ordination committee,whose chairman is Dr. Devi Shetty (NH and MSCC Founder and Chairman),consisting of executive of both the institutions has been formed which will oversee the overall functioning of the BMT Unit.
You can read more on our site.
Thanks to all the people who made this agreement possibile,we are firmly convinced that the joint staff of Cure Thalassemia,Narayana Hrudayalaya and the Mazumdar Shaw Cancer Centre can do great things for the thalassemia patients worldwide.
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