International Thalassemia Day

International Thalassemia Day is May 8. What are your plans?

Oooh!  We should put that on our calendar!   

I was thinking of having a blood drive.  Not sure yet.   

Well, I've got some exciting news about international thal day, concerning myself. Unfortunately, I will not be able to attend the TAG conference in Vegas this year, but I got a heck of a good reason why not. I've been invited to the Maldives for International Thal Day on May 8th! And I am definitely going!
I met some of the Maldivians at the first group chat I ever attended and they have been friends ever since. Sometimes they feel that the world doesn't even know they exist but I never forget them and I am so excited that I will finally get to meet most of them...I just wish Maako and Umar who are both away at school could also attend, but I am very happy that Akka who lives in Sri Lanka will probably be there. 

With 18% of the population carrying the thal gene in the Maldives, it is a huge problem there and I hope we can all lend a hand with education and encouragement. Please let them know that we know they're there and want to help them in any way we can. If anyone has thumbtack style needles they can donate, please contact me. And if anyone has any idea on how we can find them an economical source of leukocyte filters for transfusions, please, please let me know. This is an expensive burden for them and we are looking for any help we can get.

I can't wait to go and meet everyone! 

Hey Andy,

I'm really happy for this. I'm sure your trip will be of great encoragement to all the thalassemics in Maldives, specially the elder ones. I really wish I could be there.

And if anyone has any idea on how we can find them an economical source of leukocyte filters for transfusions, please, please let me know. This is an expensive burden for them

Andy this is one of the difficult problem faced by thalassemics in Maldives. Thank you for mentioning this.

Hi,
   Is there any way that you can bring a PC or laptop there in the conf with an internet connection so that we can all join in via the Chat client on this fabulous site?

I've been invited to the Maldives for International Thal Day on May 8th! And I am definitely going!
I met some of the Maldivians at the first group chat I ever attended and they have been friends ever since.

Salute, Andy! You are such a powerhouse for this group. 

Look forward to hearing all about it.

I'm so glad you are going, Andy!  You so deserve it!   

You're awesome!   

hello
i am faizan from maldives and i am looking forward for that day

Glad to know there is such an occation. :smile2

This is good that Andy is going to attend the meeting at Maldives and one of the active members of this forum Mr Sajid Rauf's has said that if Andy could take a laptop there so that we people get the benefits of the meetings online.I appreciate Sajid Rauf's idea.
Irfan

It’s really interesting, Maldives is at last on thalassemia forum, and Thalassemia is major problem. I have learned from Company in USA that some of you who are going to Maldives have collected some Sub Q needles to be taken to Maldives. We really appreciate for these help. Thalassemia patients in Maldives really need world wide support. We have over 500 beta thalassemia major patients who receive regular blood transfusions. Usually in Maldives we have directed donors either from family and friends, leuko depletion is optional for those who can afford bed side filters. I hope from people in this forum else where in the world we will get more support. I am Maldivian studying in North America, to treat thalassemia and doing research on thalassemia iron chelation.

Since the first time I participated in a group chat at Thalassemia Patients and Friends, at Lisa's request, the Maldivians have had a special place in my heart. That day I met Maako, Niuma, Vittey and Shaneez, and they have been friends ever since. I have made many other Maldivian friends and am so happy that finally I will get to meet them face-to-face.

The world may have had a hard time finding the Maldives, but the Maldivians have reached out to the world and their friendship is drawing the world into them. They've got a big problem with 18% of the population carrying the thal gene and we need to give them all the help dealing with this that we can. It's been done in Cyprus and it can be done in the Maldives. I challenge the international community and the international organization to make this a reality through testing before marriage programs. Let's get it done.

And I'd like to remind those in the US who have given up pumping that I am looking for a working pump in good condition to take to a young girl in the Maldives. Your help would be greatly appreciated. Please message me if you can help.

Thank you,

can anyone tell me since when International Thalassaemia Day are being celebrated?  and the story behind this celebration?

Hi Andy, I have learn fron Nofolk Medicals in USA that you are planning to visit to Maldives. I am a Maldivian here in Canada,These friends you have mentioned Vitte, Niuma and Maaco they are nice kids, I know them all, as I have worked in thalassemia centre for some time.

At present I am working to find an alternative for iron chelation, I will be happy to share the knowledge in this forum.

At present I am working to find an alternative for iron chelation, I will be happy to share the knowledge in this forum.

Hi,
    Please do tell us soon. I am anxious to get away from all that needle pricking no matter how may pills I have to take or drink what is unpalatable!