New Category: What is Thalassemia?

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Offline Andy Battaglia

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New Category: What is Thalassemia?
« on: March 09, 2008, 05:41:46 AM »
At the request of Canadian Family and the general concurrence of our members, I have added a new category named "What is Thalassemia?" I will be posting basic information about thalassemia here as I get time, so that we will have an area where members and visitors can learn the basics. We get the same questions repeated by almost every new member and this will provide a central area to answer those questions. This will be a closed category, so posting will not be enabled.

It will take some time but in the end we will have a more complete site of more value to all.
Andy

All we are saying is give thals a chance.

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Offline §ãJ¡Ð ساجد

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Re: New Category: What is Thalassemia?
« Reply #1 on: March 09, 2008, 07:12:23 AM »
:hi5boys

Great going! This will surely save a lot of newcomers to get the basic info about Thal. You can add the following link to ask them for further detailed reading:

http://en.wikipedia.org/wiki/Thalassemia#Pathophysiology
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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Offline Manal

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Re: New Category: What is Thalassemia?
« Reply #2 on: March 09, 2008, 12:15:05 PM »
Good Job Andy, thanks :hugfriend

Manal

Re: New Category: What is Thalassemia?
« Reply #3 on: March 09, 2008, 03:47:24 PM »
Thank you Andy.

This is a great start. The language is very simple and immediately put ones mind to ease due to positive message of hope. This is a welcoming message and great effort by Andy.

Regards.

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Offline Andy Battaglia

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Re: New Category: What is Thalassemia?
« Reply #4 on: March 09, 2008, 05:16:54 PM »
Thanks for the comments. I am making an effort to weigh every word, as it is so important that newcomers quickly learn that thalassemia is manageable. Few sites think about the initial reaction someone will have to what they read, and even today I still find sites that say majors die, without qualifying that statement.

I have already thought about the possibility of linking to another site for a more in depth description, but realized there were several problems with that. If someone finds us we do hope they will also find the help we have to offer and by immediately directing them somewhere else, we may never get the chance to help them. Also, we have no control over the content of other sites and I hope we can be unique by presenting information in a way that will be both informative and accessible, while maintaining the friendly, welcoming nature of this site.

As was pointed out by Canadian Family and also Danielle in a PM, the way it is worded has great value and I am taking a great deal of time working on the wording so that it is easily understood and also always gives a positive message. We may have only a few seconds to impress someone who comes across our site that this is what they are looking for, so I hope my familiarity with marketing can help us market our group to newcomers. We already know this is the best site around and that our members are real people and not generated by a computer module, so let's make sure we make a good impression on those searching for help.

I will be making an attempt to explain the different types and classifications of thalassemia in language that people can understand and at all times I will be stressing the absolute importance of education and awareness. The words of those who have discovered their child is thalassemic have made a powerful impact on me over the years and the necessity of doing all we can to educate people so they can make informed decisions about having children, is paramount. I don't want to say the old adage about "if we can only help one person, we have done our job" since we have already helped so many people. I will not be satisfied with helping only one. When every single person who needs help can find it, then we can say we have done our job.
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: New Category: What is Thalassemia?
« Reply #5 on: March 16, 2008, 04:02:58 AM »
Just a note that I have added a section on thal major to beta thalassemia post.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.0.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: New Category: What is Thalassemia?
« Reply #6 on: March 17, 2008, 01:12:28 AM »
Andy, you are doing a great work, the information are wrapped with a spirit full of encourgement, support, comfort, optimism........ everything parents would need at this stage.  Indeed you are considering their feelings at those difficult moments. Truely, thank you  :hugfriend

Manal
« Last Edit: March 17, 2008, 01:52:52 AM by Manal »

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Offline KHALIFA

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Re: New Category: What is Thalassemia?
« Reply #7 on: March 17, 2008, 01:29:16 AM »
                  :thankyou    :ty     :goodluck    :khalifa
   
                                          :khalifa
                                   state of kuwait
                            one for all and all for one
RED_PILOT

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Offline Danielle

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Re: New Category: What is Thalassemia?
« Reply #8 on: March 17, 2008, 09:36:22 PM »
Andy, I honestly don't know what we would do without you. You're awesome. :clapcheergirl :thankyou

 

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