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Author Topic: Australian Thalassaemia Association  (Read 46324 times)
Miaki
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« on: February 11, 2006, 11:13:57 PM »

Australian Thalassaemia Association

C/O 333 Waverley Road
Mount Waverley
Victoria 3149
AUSTRALIA

Phone:  +61 3 9888 2211
Fax:      +61 3 9888 2150

To contact via email you can write to info@thalassaemia.org.au for the time being.

http://www.thalassaemia.org.au/
« Last Edit: March 22, 2012, 08:51:13 AM by Andy » Logged
eiRini
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WWW
« Reply #1 on: February 13, 2006, 03:55:37 AM »

The ATA has a fantastic blog at http://australianbloodenquirer.blogspot.com/
It also lists all the details of the state associations right across Australia (where they exist).
EnjoY! 
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Danielle
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« Reply #2 on: February 13, 2006, 10:25:50 AM »

That's a great blog!  Thank you for posting that, eiRini!   
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Bappy
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« Reply #3 on: December 03, 2009, 05:41:59 AM »

Hi there i am bappy from bangladesh.i suffaring thalasamia from21 year. i takeing treatment in bangladesh,but in bangladesh there have no better treatment,so i dicided to go out in this country for treatment.if you have any option pleace notic me or how can i get better treatment plz suggest me.       

thank u so much
  bappy 
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I am a thalassamia E-beta patient and I am a M.B.S student
Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #4 on: December 03, 2009, 08:45:22 AM »

Hi Bappy,

Are you aware of the ASHA – Thalassemia Center in Dhaka? It opened in 2008. Please check the info at
http://www.thals.org/en/About-Foundation/ASHA-Thalassemia-Center.html

Contact:  Riffat Laila
                 Administrative Coordinator

Address:  44/2 Chamelibagh, Shantinagar
                 Dhaka 1217
                 Bangladesh

                 Phone: +880 2 8332481
                             +880 119 084 0191

                 Email: info@thals.org 
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Andy

All we are saying is give thals a chance.
Bappy
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« Reply #5 on: December 04, 2009, 03:44:09 AM »

Hi there,
it's me bappy again.i am new member in this side & i am trying to contact with you,one kind person give me this address and then i able to contact with you.I live a small poor family.I am a thalasamia patient.My father saparate us when i was 3 year old.only couse of my thalasamia and he married another women.My mother is very poor and she not able to carry my all treatments expense's.
My mother spent her all money for my treatments.She already unable to carry my study and treatments expense's,now i need your help.I am also a member of ASA thalasamia faundation my Id number is 387.When i ask some help from them they refusce me and there treatment expencess nearly 6000 taka which is not possiable for me.Anyhow i running my tansfution treatment.I want to live in this wanderful world.Please Please help me.

 I therefor,pray and hope that for a financial support for my treatment and give me a chance to live this wonderful world.

Thank you for your support
MD.Saddam Hossain (bappy)

 
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Bappy
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« Reply #6 on: January 20, 2010, 08:59:50 AM »

hello friends
it's bappy againe.may be 15 day after i sing in this side,i hopping some kind of responce but i desipoiented.i am alowyes decipoiented when i start some thing.my 22year is going like this.

thanx all of you for trying to help me
bappy
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Andy Battaglia
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« Reply #7 on: January 20, 2010, 09:11:53 AM »

Bappy,

I contacted Dr Robin from the thal center and he said they can provide all your treatment at no cost, except for the chelator, because they do not have enough funding to provide for chelators for the many patients. If anyone has any ideas for Bappy and how he can get access to chelation, please let us know ASAP.

Quote
Hi Andy,
I gone through his message in the forum. I know this boy for a while. He started writing appeal for help an year ago to TIF and some other places. They referred him to us. I talked to him once though didnt meet him.

We at ASHA Thalassemia Center offer best possible treatment in Bangladesh given the resource limitation. You might know that there is no government support neither to thalassemia patient nor to us as an organization. We import the medicines from India which are costly. Transfusion and lab testing also costs money. Therefore we can not provide free treatment which will risk our sustainability. Given the case, I offered him medical consultation at our center without any charge but we cannt give free transfusion or iron chelators. Sometimes we get Desferal and Exjade as gifts that we distribute among patients like this who visit our center regularly.

The boy is getting Desirox (Indian Deferasirox) from our center more or less regularly with occasional pause. The 6000tk(80$) he seeks in his message is the cost of iron chelator he requires monthly. He is indeed getting help from our center but I am afraid we can't offer iron chelators free.

I am glad that you wrote me. I don't look into the forums regularly. If you find Bangladeshi patients seeking assistance, please let me know.

Best Regards,
Robin

Contact:  Riffat Laila
                 Administrative Coordinator

Address:  44/2 Chamelibagh, Shantinagar
                 Dhaka 1217
                 Bangladesh

                 Phone: +880 2 8332481
                             +880 119 084 0191

                 Email: info@thals.org



http://www.thals.org/en
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Andy

All we are saying is give thals a chance.
Zaini
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« Reply #8 on: January 20, 2010, 11:06:14 AM »

Bappy,

I am really sorry to hear about your situation,aren't their any non govt organizations in Bangladesh which can support you ?

Zaini.
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Bappy
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« Reply #9 on: February 06, 2010, 12:38:17 AM »

Hello zaini
              Thanks for your massage.sorry for late replay b'couse i used my friend computer
 for this reason i able to replay you.Yes there have some organaigation which can support me.
But there treatment expencess are very high,that i am unable to afford b'couse of my family situation is not well.please pray for me

thanks for your massage
Bappy
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Lena
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« Reply #10 on: February 06, 2010, 09:39:22 AM »


I have just read (I do not know how I could have missed it) Bappy's message and it made me feel very sad. That's the reason I consider TIF's role should be to take an active part in third world countries.

What is your ferritin, Bappy? and on what chelators are you on?do you take them every day?

Lena.
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Andy Battaglia
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« Reply #11 on: February 06, 2010, 01:04:18 PM »

I agree that TIF should be doing far more, but I also have to add that the problem of thalassemia is vast in Asia and as countries develop, we are beginning to see just how extensive the problem is. Whereas previously, most thals died at a very young age in these countries, with the new advances in treatment and the economic development of these countries takes place, patients are getting minimal care at the least, leading to patients surviving and creating a new demand for treatment. When you look at the scope of the problem and how many thousands of thal majors are born every year, we see that the only long term solution is testing and working towards elimination of thal major births. Some think this is harsh, but sometimes we need to separate ourselves from the emotional issues (I have talked to thals who are steadfastly opposed to trying to limit the births of majors) and look at this problem is a realistic manner. And once reality is introduced into this subject, economics has to be taken into account and frankly, the world cannot afford to take care of the amount of thal majors born every year. So either we say forget the poor, or we take responsibility and do everything we can to stress the importance of testing and even pass laws requiring it before marriage. It would really help if all thals themselves could get on board with this way of thinking.

The problem in Bangaldesh is immense. In addition to beta thalassemia, HbE beta thal is also prevalent. Bangaldesh is also one of the poorest nations on earth. We have to be very thankful for people like Dr Robin and his group. While Robin's family has moved to Canada and his sister has access to top notch treatment, Robin has chosen to remain in his native country to work with thals. He could easily follow his family to Canada and become a well off doctor, but he has chosen a path that is not about himself, but instead about others. I plead for anyone who has funds or materials and supplies to donate, to please contact the treatment center run by Robin. They need help. They are providing blood for patients but do not have the funding to provide chelators, supplies and other medicines. What we can each do, even if only in a small way, will help patients live. We also need to continuously stress these problems to TIF and all international organizations that can help.

Bappy, I have talked to Dr Robin and he does want to help you. Please call him as soon as possible.

For anyone wanting to help,

Contact:  Riffat Laila
                 Administrative Coordinator

Address:  44/2 Chamelibagh, Shantinagar
                 Dhaka 1217
                 Bangladesh

                 Phone: +880 2 8332481
                             +880 119 084 0191

                 Email: info@thals.org

http://www.thals.org/en
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Andy

All we are saying is give thals a chance.
Bappy
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« Reply #12 on: February 11, 2010, 11:03:24 AM »

hello lena mam,
I am very happy for your replay.yes,I also think TIF should do that.I attend last seminar in sheshu thalasamia hospital.There i able to see Mr.gorge he came from TIF,But unfortunately i am unable to talk with him.

lena mam,you want to know about my ferritin,chelators and other things.
my ferritin is 2710.I take my blood test,last two month ago,I taken deseirox tablets,not regularly because some (money) problem.I hope next month i can continue that.I take my blood transfusion from red-crisent blood center every 22 days after.Next morning i have to visit there for transfusion.please pray for me because last time its take reaction. 

    Thanks
           Bappy
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Andy Battaglia
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« Reply #13 on: February 11, 2010, 12:44:44 PM »

Bappy,

Have you talked to Dr Robin recently?
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Andy

All we are saying is give thals a chance.
Bappy
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« Reply #14 on: February 19, 2010, 01:30:44 AM »


Hi There
This is bappy again.I am very happy to mail you.You asked me,am i talked to Dr.robin?
Not yet,I am unable to talked with Dr.robin because he little busy for preparing his examination.
But i am able to talked with Riffat apu(sister).She told me to came next Friday.I conformed you that,
I am going to visit them as soon as possible.you know i have a reaction in last transfusion.I am still
suffering bone Paine and eyes problem.For this reason i am late to visit them.After visit them,I mail
you again

Thanks
Bappy
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