The Iranian Thalassaemia Society

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The Iranian Thalassaemia Society
« on: August 07, 2008, 05:43:18 PM »
Hi , I'm Bijan From Iran
I am Thalassemic Patient And Member Of Iranian Thalassaemia Society And This Is A Relational Of Iranian Thalassaemia society .
The Iranian Thalassemia Society was founded by doctors and parents in 1989.The sixth board of directors of the Society received it on the 25 Dec.2004.At the beginning the board of directors met with a lot of problems including:

1- The bankruptcy of many governmental (public) hospitals due to their self management which caused the closure or limitation of Thalassemic patients wards , and created problems in the way of supplying services and equipments.

2-The shortage of the Society's cash assets compared to its debts.

3- The Society's credibility decline from an authority programming aggregate to a social aid fund.

The sixth board of directors tried to obviate these problems and improve patients' therapeutic criteria. Also we tried to reform the infrastructural of the society.

Te most important activities of this society are:

•  To present a program for guidance of subsides and decrease of unnecessary expenses for thalassemic patients and to eliminate dubious expenditures:

This was achieved from the beginning of the society's work by establishing continuous meetings with deputy and counselor of the minister of welfare and social security and finally the deputies committee of this ministry sanctioned the organization grid of specific patients and allotment of intelligent cards to these patients. We hope that this program will result exactly as the society scientific and practical principles suggested.

•  Collection the exact demographic information of thalasemics:

At the beginning of the sixth board of directors” work the databanks of Iranian Thalassemic patients were incomplete and they were they were reported between 15000 to 35000 but since supplying the exact information is very important for programming, this society tried to provide exact demographics data of patients. Owing to the reports there are 18649 patients and this is the most exact statistics of data banks of thalassemic patients. Nevertheless the establishment of a patients' information network is needed.

•  To direct the instance payment to patients:

At the beginning of our job many payments were given to patients without any policy or criteria. We tried to explain clear criteria for our payments to patients and most of our financial support belonged to treatment costs.

 

•  Direct connection with governmental organizations which are involved in Thalassemia medical needs.

These mutual projects in the field of Thalassemia were performed by strengthening the connection with Iran Blood Transfusion organization and insurance companies. These projects included publicizing and propagating continuous blood donation and establishing coordinated programs for distribution of medical facilities for the patients.

•  Installation of periodical educational workshops in different provinces of the country:

One of the delayed programs of Iranian Thalassemia Society was training of patients and their family. We decided to install these workshops in different provinces of the country which included Tabriz , Kermanshah ,Guillan,and karaj workshops.

•  Publication of seasonal magazines continuously and legitimately:

In the past these magazines were printed irregularly and headless to the country's laws regarding internal bulletins, but we tried to print them continuously and legitimately.

•  Edition of a comprehensive program :

In this field, the programming forms and the manner of filling were provided and sent to different departments of the health ministry and welfare ministry.

•  Communication with the scientific associations of the country:

Iranian Thalassemia Society has tried to change from an unscientific organization to a coordinator of the country's specialized community in the field of therapeutic-scientific theories presentation. Now this society is known a real coordinator by all specialized associations of the country.

•  Establishment independent provincial branches:

We have tried to establish independent and selected manner branches of Iranian Thalassemia Society in all of the country's provinces .Establishing branches in deprived provinces like Ilam, Sistan and Balouchestan are the results of our work.

•  Financial clarification:

We changed the society from an indebted organization to an organization with financial backing. This was done by reducing current expenses and the personnel of the society office. However we increased therapeutic and educational expenditures of the society. We established a clear policy and criteria for our payments to patients.

The numbers tell our tale.

•  Recreational tours and welfare programs for patients:

In this regard we distributed a number of theater and tele-cabine tickets and held three camps in Namakabroud, Tange vashi and Tochall for patients.

•  Arrangement the new constitution for the Iranian Thalassemia Society:

In this constitution, all the provincial branches have the right to vote at the society assembly, in proportion to the number of their patients. That is why this society has become a democratic and elected society in Iran .

•  Starting a plan for providing safe blood for thalassemic patients from multiple known donors with the aid of Iran blood transfusion organization .

•  Active participation in collecting the weak points of the Thalassemia prevention program .

You Can Contact With Us In :
Website : http://www.its-iranian.com/en/index.asp
Email Address :  info@its-iranian.com
TeleFax :  +98 21 - 88 91 85 88 - +98 21 - 88 91 85 89
Also this Is My Own Website In Persian And English Languag :
www.pejvakcenter.com
And My Own Forum for All Friends :
www.pejvakcenter.com/forum

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Offline Zaini

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Re: The Iranian Thalassaemia Society
« Reply #1 on: August 09, 2008, 06:47:17 PM »
Hello Bijan,

Welcome to the family :).

ZAINI.
^*^Xaini^*^

 

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