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Events happening for Thalassaemia Day
Narendra:
In USA, TAG conference is in Washington, DC from 8-11 May 2008
More details can be found at :- http://cooleysanemia.com/sections.php?sec=357
Angel123:
Hi all,
I recently heard about a big event undertaken by the Colleys anemia Foundation. This year it was held in New York at the Tavern on the Green and had a huge amount of patrons. I was not lucky enough to attend it but was happy to hear that it seemed to be successful. the main thing that struck the person attending was the lovely presentation done by the parents and patient in conjunction with the foundation. It showed that the organisers really did the home work and knew what would have worked best in their instance.
It may not work in every country but their idea was fantastic, find established individuals and get them to understand the condition and the treatment. Then get them involved in the actual "marketing" of the tickets and fund raising part. This promotes awareness as well as helps with funding needed for everything else.
Hats off Cooleys , Frank Somma and the celebrity Chazz Palminteri who went all out for this.
Great job!!!!
Narendra:
--- Quote from: Narendra on April 15, 2008, 04:12:29 PM ---In USA, TAG conference is in Washington, DC from 8-11 May 2008
More details can be found at :- http://cooleysanemia.com/sections.php?sec=357
--- End quote ---
Anyone attending the TAG conference in Washington DC this weekend? Even though it shows the conference is for 3 days, Saturday is the day when most of the agenda is. Obviously, it is good to meet others at the conference if someone can make it for 3 days.
The agenda includes Gene Therapy, Chelation Panel, Comprehensive Care, TCRN/NIH (Don't know what that means), Cardiology Panel and the List of Invitees include Dr. Ellis Neufeld (Boston Childrens Hospital), John Wood (Childrens Hospital LA), Robert Grady(Cornell Univ), Michel Sadelain(Memorial Sloan-Kettering), Sujit Sheth(Columbia Presbyterian - who I think will talk about Ferriscan and MRI)
For more details on conference agenda:- http://brucerod.com/tag/conference/2008/TAG_Conference_Agenda_2008.pdf
Andy Battaglia:
I'm surprised this conference isn't publicized more. No one from TAG has even mentioned it here.
§ãJ¡Ð ساجد:
There's going to be Thal. Day celebrated (I'm not sure if this is the right word for it) here in Rwp/Isl. at Pakistan Institute of Medical Sciences (P.I.M.S) with the collaboration of Jamila Sultana Foundation and other Thal. Centers of the city.
Agenda will be as usual :yawn (progress of treatment and care facilites and musical performances by kids). :great
The chief guest will be Federal Health Minister Ms. Sherry(Shehrbano) Rehman
I was going skip this event as it's going to be the same old speeches again with no improvement regarding new innovations in technology like FerriScan, issues regarding the price of Asunra, availibility of Desferal, nothing about the awareness among population and social wellbeing of Thals.
Plus I have a sufficient dose of kids rattle every week when my nephews visit :biggrin
UNTIL I receive a last minute call from JSF. Telling me to be the Chief Guest representing them :o :shocked
I don't have the slightest idea what I will do there. The only thing they told me is that they want to know about this site :biggrin and how am I contributing as a rep of JSF and Pakistan :biggrin
I think this is a great opportunity for drawing more attention of the doctors (and hopefully the health minister) to see what is going on around the world regarding Thal. and where Pakistan stands.
I need all the tips from everyone here so that I could tell them to at least visit this site once and see the innovations in the treatment and management of Thal. worldwide. I would really like them to know about FerriScan, rejection of the stigmas associated with Thal. and how our older members are living a perfectly normal healthy life.
Andy,
Will it be o.k if I register a short redirecting URL to the site as I have noticed that with our current URL people tend to get confused with the plurals involved and the British and American spelling of Thal. I want to give out the URL to everyone that I meet :plot
I think I will go for something like "thalsite" I will find a suitable service and send you a PM about it.
I wish I had our JSF site completed BUT NOOOO my project manager is too busy doing other things. I have the site half uploaded for about 6 months or so with all the blanks ready to be filled by him. :frustrated
Edit: I've registered makethal.better.ws Try it out and share it with your friends and family! :)
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