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55155 Posts in 5879 Topics by 6155 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Bone Marrow Transplant Centers  (Read 28910 times)
Andy Battaglia
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Will thal rule you or will you rule thal?


« on: February 28, 2012, 06:54:10 PM »

For a list of BMT centers around the world, please click on the link below. This list will change and they would also like to be informed of centers that are not on the list.

http://www.curethalassemia.org/bone-marrow-transplantation-bmt/transplant-centers/
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Andy

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EugenioLaMesa
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« Reply #1 on: March 17, 2012, 08:14:49 AM »

Thanks Andy, we are constantly adding new BMT centers.
If any member of the forum wants to suggest new centers, please leave a comment here, or contact us through the Cure Thalassemia site: http://www.curethalassemia.org/contact/
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Eugenio La Mesa
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Syaida Lee
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« Reply #2 on: May 21, 2012, 11:12:14 PM »

Dear All,

Please add, Dr. Chun Fu Li of Nan Fang Hospital, Guangzhou China.
I had the pleasure of meeting him in Turkey last year.
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« Reply #3 on: May 22, 2012, 09:55:33 AM »

Dear Syaida,

thanks for the information, we have updated the page:
http://www.curethalassemia.org/bone-marrow-transplantation-bmt/transplant-centers/

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Eugenio La Mesa
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leonardo
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« Reply #4 on: June 07, 2012, 08:09:29 AM »

Dear dr. La Mesa, dear Andy,
we had meet prof.Lucarelli last week ago in Rome.
He said that the unrelated bone marrow transplant isnt't a good way...too diffucult..too risks...especially in case of China..like our case.
in fact we have adopted a 4 years old child alfathal CS from Guanzhou.
He speak us about gene therapy that in MIlano San Raffaele it'll devolepped.
I've contacted him but they said that this cure isn't able to save the ALFA THAL costant spring....
At moment we d'ont know what have to do....we are very preoccupied because our son it'll insert into cronical trasfusional protocol.....
Have you som suggestions?

thanks for sharing
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« Reply #5 on: June 07, 2012, 11:47:21 AM »

Dear Leonardo,

Prof. Lucarelli is the worldwide authority in the filed of thalassemia (and Cure Thalassemia scientific advisor), you have met the best doctor in the world for this topic. I can't add anything, I'm so sorry.

I'll pray for you and your child.

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Eugenio La Mesa
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Andy Battaglia
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« Reply #6 on: June 07, 2012, 12:04:04 PM »

Folic acid and transfusion when required is the protocol for HbH constant spring.
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Andy

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leonardo
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« Reply #7 on: June 07, 2012, 02:52:04 PM »

Dear Leonardo,

Prof. Lucarelli is the worldwide authority in the filed of thalassemia (and Cure Thalassemia scientific advisor), you have met the best doctor in the world for this topic. I can't add anything, I'm so sorry.

I'll pray for you and your child.


dear Eugenio La Mesa,
yes I know....Lucarelli it's the best doctor but I would know if someone in the world are planning to study gene therapy about alfa thal costant spring. this is the topic. The reserche carried on by MIlano staff it's dedicated only for beta thal.
Have you some data number about worldwide alfa thal costant spring? It's really few interesting this disease for scientific world?Huh?

Andy, yes I know about folic acid and trasfusion (montly in my case) but how many years do you think LEonardo will survive?
sorry for my insistence.
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Andy Battaglia
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« Reply #8 on: June 07, 2012, 03:00:22 PM »

If the thalassemia is well managed with transfusions and chelation, the child should live a long time. The life expectancy of thals has increased greatly over the past 20 years, with thals now living into their 60's. HbH constant spring is usually a less severe condition that beta thal major, so there has not been much emphasis on finding a cure.
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Andy

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leonardo
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« Reply #9 on: June 07, 2012, 04:01:49 PM »

thank's Andy, but what are the difference between beta thal major and alfa thal costant spring?
Leonardo has to set hb level over 9 to prevent bone abformity then the trasfusion are set montly!
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Andy Battaglia
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« Reply #10 on: June 07, 2012, 04:41:25 PM »

The transfusion schedule is usually more like intermedia than major. Hence, once per month rather  than every 2-3 weeks. In the long run, iron stores should be easier to manage, as there will be fewer transfusions per year.
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Andy

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EugenioLaMesa
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« Reply #11 on: June 07, 2012, 05:00:47 PM »

dear Eugenio La Mesa,
yes I know....Lucarelli it's the best doctor but I would know if someone in the world are planning to study gene therapy about alfa thal costant spring. this is the topic. The reserche carried on by MIlano staff it's dedicated only for beta thal.
Have you some data number about worldwide alfa thal costant spring? It's really few interesting this disease for scientific world?Huh?


Dear Leonardo, I don't have any numbers about what you're asking. If I'll find some, I'll let you know.
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Eugenio La Mesa
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leonardo
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« Reply #12 on: June 08, 2012, 03:20:15 AM »

Thank's lot Eugenio, I'll wait it.
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mumtaz
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« Reply #13 on: October 05, 2017, 05:12:09 AM »

hi.. pls add few names in list of BMT hospitals in Pakistan
1) Aga Khan hospital - Karachi
2) Children Hospital - Lahore
3) CMH -Pindi(islamabad)
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EugenioLaMesa
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« Reply #14 on: October 08, 2017, 12:59:16 PM »

Can you please confirm that each those 3 hospitals have a BMT unit?

Let me know so that I'll then add them

Thanks
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Eugenio La Mesa
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