conferences are really helpful or just a way to spend money - Thalforum

vikaskapoor · October 2nd, 2005, 02:15 PM

hi friends,

as you know there are conferences going on everywhere , right now we are having one in pune then in canada and the father of all conf in dubai in january. if we see there is one conf going on every month in some part of the world. i always wonder that do we need such conferences where we hear same kinda things again , again and all over again and the thing which bothers me is do we have to spend endless amount of money on such conferences . i am secratary of t.a.s which is a part of thalassemics india , we have a conf last year in 5 star hotel . i told this to my society also that we dont have to spend this much only on conf and especially when we have so many needed ppl here in india and i think that applies to all the developing countries. we have so many thals who cant afford desferal even filters or proper treatment. the amount of money we spend on these events cant be calculated and i dont think i have to explain you guys that from that amount how many thals can be benifitted.

my ques is very simple to everyone that do we need to spend this much amount of money , cant we have a confin a v simple way , we just ned nfo not a coffee in a five star hotel or a/c rooms to stay

well this is a topic i always wanted to discuss but was thinking how should i ask you guys so i figured out that poll on this topic would be a good idea

if you cant reply pls atleast vote for an option.

regards
vikas kapoor

Vik · October 3rd, 2005, 12:10 AM

I voted for "Conferences are important, both big and small."

Reason for my vote:

1. Thalassemia is one of the most common genetic blood disorder in the world.
2. Due to inter-faith, inter-caste and inter-race marriages this genetic disorder is spreading wide and spreading REAL fast in MANY MANY communities around the world.
3. Thalassemia minor is largely non-symptomatic is most cases which means many people who are thalassemia minor will not know about it till they are specially tested for this disease.
4. Thalassemia is a chronic illness and there is no cure for this problem. The treatment is PAINFUL and EXPENSIVE.
5. There is a TOTAL lack of awareness in many countries and communities which are MOST affected by thalassemia.
6. Besides a few handful countries like Greece, Italy, Saudi Arabia and Turkey, most countries do not even have initiatives and thalassemia awareness and social programs to help thalassemia patients and stop the spread of thalassemia.
7. There is no mandate (or requirements) for a doctor to check for thalassemia during pregancy. Communities are not aware and people who have thalassemia minor do not even know if they have this problem till they have a child who has thalassemia.
8. There is a HUGE HUGE STIGMA attached to the illness and this is not even discussed openly even in families that have been indirectly affected by Thalassemia.

In such a senario HOW will we, the people connected with thalassemia spread awareness to our cause? Who will tell the people who have choosen not to talk about this problem to show how serious this issue is? Who will tell the Government's of these lazy countries to WAKE up and start acting NOW before this problem becomes uncontrollable?

Conferences not only help patients and care-givers an oppurtunity to talk and exhange information (even if it is recycled) but also help in spreading awareness and highlighting THALASSEMIA via the media to the local population. YES, a lot of money is spent on these conferences.. but thats what we have to do .. in order to spread the word out there to the people, doctors, media, nurses, caregivers, etc..

Hope I am able to convey my opinion positively.

great topic for discussion Vikas, good thinking!

Vikram

Pranav · October 3rd, 2005, 03:59 AM

hi guys
I thing "Simple conferences will be better idea, not in 5 star hotels." because confrences held every or alternative months are usefull coz everyone would not be able to attend each confrence. Vikas - have we attended confrence in canada,are you attending confrence in Pune.

yes it is not neccesary to have confrence in 5star hotels,this will save our funds.

Pranav

vamanjani · October 3rd, 2005, 08:34 AM

Dear all,
International conferences may be of immense value to Doctors treating the thal patients but as far as the parents of thals are concerned, they hardly gain anything since their child is being attended to by the concerned Doctors.
As far as our country is concerned, I strongly feel that instead of spending money on conferences, it will be ideal if that fund is diverted for awareness program or for that matter carryingout thal related blood test amongst high risk communities so as to control the future births. This is where we can be successful as far as the eradication of thalassaemia is concerned. To go for its cure, its not within the reach of everyone as we all know. About 99 percent of the parents go for blood transfusion as they cant afford iron chelation and the child dies due to iron overload. Let us be realistic and practical in our approach.
Vaman Jani

Vik · October 11th, 2005, 06:57 PM

Dear Vamanjani,
You have a good point.

In many conferences patients may not have enough to gain since their life does not change overnight after attending the conference.

Sometimes conferences, especially a patient-parent conference are good because thals can interact and learn from each other. They find encourgement and help talking to other thals and parent's of other thals.

However, YES, chelation and treatment take precidence over anything else.

Vik

vikaskapoor · October 13th, 2005, 03:09 PM

damm right guys,

you know why i am more than interested in the int conf in dubai , because i got so much of encouragment from thals and thier parents last time in palermo, italy conf . so i cant miss this one also , thats the kinda conf i need at the first place but we cant deny that conf in all sense is informative which is of same importance.
last time i have attended 2-3 sessions (scientific) and franklly speaking everythng went over my head , i was like literally sleeping in those ones and in patient to patient session i felt satisfied.

so i vote for patient to patient conferences.

regards
vikas kapoor

Pranav · October 13th, 2005, 03:38 PM

I vikas

I too was getting bored when i went to attend the conference in Cyprus ,but I don't think either of us would say the same thing about our confrence in Delhi last year. Perhaps it coz we knew half of the thals & doc as they were from our country , but the news about what new is going on in other countries we got from that very confrence.
You got to know more about ICL 670 in Italy & me in Cyprus. That made people here a lot more curious. As far as i know this time its only that how many & who all are going to dubai confrence. The questions would start comming when we people come back

Regards
Pranav

Ralf · October 14th, 2005, 08:35 AM

conferences r important both big n small coz they help us the thal patients we get knowledge we come to know what the views r of other thal patients .

vamanjani · November 15th, 2005, 01:19 PM

Dear all,
Let us not make organising conferences a debatable issue.
As we all know that at every conferences, some presentations are made as recycled or routine presentation with a couple of more topics like as we had this year at Pune where we heard about stemcell/cord blood transplant and gene therapy and its success ratio.
It certainly enlightens the Doctors attending such conferences by virtue of which, they are, perhaps, able to treat the patients well.
The point on which I am trying to emphasise that in every conferences, there are quite a few patients and parents who attend and gain knowledge, perhaps, half or otherwise but what purpose will it serve to them with their limited means? Does everyone who attends to this conference is in a position to go for BMT or stem cell transplant or gene therapy? In reality, most of them are not in a position to provide filters and iron chelating drugs.This is a fact.
Ofcourse, everyone cant afford having a computer system at home but I feel that this site is doing a commandable job in providing information on this genetic blood disorder and sharing their experiences which has far greater impact on parents/patients than attending conferences.
I feel that time has come for all of now to unite and come under one umbrella to undertake massive awareness programmes wherever you are to make understand people about this dreadful disorder and request them not to arrange marriages without undergoing thalassaemia blood test.
It is the prevention programme in the underdeveloped or the developing countries or for that matter even in the developed countries which is going to help curtail growth of new thal birth since its cure is far from reach of all.
I request all our members to share their views and offer comments/suggestions/recommendations which will be very much appreciated and we all will come to a concrete understanding as to how to go about in future.

Vaman Jani

Prince · November 15th, 2005, 02:31 PM

Thats correct,

I have not been able to attend any conf till now.....................but i really support the cause of conf's and think that they are a great help in defining medical processes as even doctors get to learn a lot from their coleagus from diffrent part of world. We must remember that Thal is still a baby topic I mean a lot need to yet be explored about it. These confs are the platform which help doctors to re path and plan their reserch all the time as they learn from the experience by Patients & other doctors.

thalBabe21 · January 27th, 2006, 02:58 AM

Hey everyone, i just want to say that i believe that the conferences are very benifical, socially and medically. Its nice to have a chances to get to know other thals around the world that we wouldnt normally get a chance to meet, to talk to each other, to learn from one another, and to just be with others that know exactly what your going through with out having to explain it. To feel normal if that makes any sence. And medically its a great oppertunity to talk to drs from around the world that are experts in thalassemia, to learn whats going on. ect.
Anyways thats my opinion on it. Im hooked, i went to dubai which was my first international conference and i made so many friends and contacts, that i dont see my life with out them now. I learned alot from others patients and the drs.

take care
ciao
Thalbabe21

lshahani · January 30th, 2009, 01:06 PM

I feel if they are providing any new information then it is worth. Thanks

hbellani · May 16th, 2009, 09:53 PM

Hey All,

I voted for "the second option that says Confos are better off in simpler places (read "Air - Conditioned Convocation Centers") than in 5 star Hotels, the rationale/thinking behind my vote is as below:

I feel Confos are a major medium for "at least" the doctor and NGO fraternity to interact.
Otherwise a middle class Thal would never even bother to visit any other city/country to witness the kinda treatment facilities accross their own fences ...
So having witnessed a single international thal confo last year, i believe a simplistic approach towards hosting Confos will bring down the costs involved, while still serving to bring together different medical groups together under one single roof for a few days !

regards
Hemant