The idea of constructing Charity foundation of special disease was originated from when the current president of the foundation was familiarized with chronic renal failure and dialysis, Thalassaemia and Hemophilia through visiting number of patients in 1992. Critical medical and treatment conditions of these rare members of the society, happened to initiate field researches and studies and also proceeded interprovincial visits, with the aim of getting more acquainted to these patient’s difficulties thought the country. A high number of patients were detected with social disabilities, incapability of long hours of working and low money incomes coinciding with the absence of definite cure, extravagant expenses of treatments and remedies, mental and financial conditions, which describes how heavy the burden was for their families to bear….This led her to refer the catastrophic tragedy to her father” Ayatollah Hashemi Rafsanjani “. Since claiming the complications, it was appointed to consider and review the way of these patient’s life comprehensively in a more efficient manner. Fatemeh Haashemi also managed several settlements with experts and top related authorities. According to the status of these patient, it was recommended to establish a Public benefit charity in favor of special patients. In 1995 grand opening, in total, about 200 residential units and dialysis centers were provided by the former president of Iran: Ayatollah Hashemi Rafsanjani. In Vavan residential complex. And subsequently with ayatollah Haashemi’s consent, the charity foundation of special disease was established. At that time, due to perusing this importance, she was selected as a member of founding board by the Foundation's President and a group of eager individuals. Eventually on 6th of May 1996 concurrent to Thalassemia Day, the charity foundation of special disease was officially registered.Primitive measures since the beginning can be mentioned as probing patient’s lifestyles, detecting factors that contribute to cause of the diseases, approaching alternatives to improve the devastated chaotic situation, attending to elevate the efficiency of treatments and remedies and also studying prevention methods. To date, the events had been carried out constantly in the fields of treatment, prevention training, education, control and reduction of damages and impacts of the diseases.
During its more than 24 years of efforts, the Foundation has always sought alternatives to take effective and efficient steps to help patients in their situated life, particularly specific ones. Due to the high number of rare disease diagnosis and high expenses of treatments. We have committed to expand our supports by covering different types of the disease. Meaning, in addition to dialysis, thalassemia, and hemophilia patients, other disease such as cancer, MS, kidney transplantation, diabetes, and EB have also been included.We are proud to announce that 449 billion Rials was donated to more than 453,106 patients to assist specific and incurable patients medically. The Foundation to date has also donated 29980,000,000 Rials to more than 29980 kidney donors to admire this self-devotion of them.
1. Stimulating government, authorities, and various national communities contribute in resolving and supporting social-medical problems and needs of specific patients 2. Taking measures to optimize the use of the facilities and credits.3. Elevating social-scientific awareness of patients, families and the society towards the low and quality of specific diseases through advertising and publishing.4. Organizing the events, supports, associations and scientific programs.5. Providing opportunities such as research, education, diagnostic, therapeutic, medical, social and services accompanied by national and international supports.6. Represent and suggest measures to the executive authorities, in the hope that the medical and social status of special patients are improved.
Fatemeh Hashemi BahrmaniShafiqa RahidehHashem JanatpourMohammad Farhadi LangroudiIraj Fazel ArdestaniSeyed Hossein Marashi
In the name of GodToday, as I glance at the traversed path, I thank the Almighty God whose wisdom gave me and my hard-working companions the opportunity to accomplish the duty of relieving this agony of patients and easing this heavy burden shouldered by their families. We are to wipe away the tearful eyes of their loved ones. All praise and thanks to whom drenched a sip from the sea of mercy to me and others during these years. A taste of being blessed by our creator by quenching a pain of mankind.
Through the hardships, I am deeply honored to provide support, education, prevention, treatment and the familiarization of special disease in a manner to bring the comfort and medical supply for patients and families, therefore by raising the level of patient supports and publicizing prevention methods, the society is conducted in an accurate direction to reduce the spreading of such disease and its harmful effects on society in a greater secure fashion.
The support of compassionate and knowledgeable social leaders, especially Ayatollah Hashemi Rafsanjani, as a founder in this regard, both during and after his flourishing presidency time, was it not simple to reach such a triumphant attainment. The assistance of the country's officials and the companionships of each of the honest and loyal individuals, to date, concluded the name of this foundation shining with honorable records on the back ground of social righteousness.
Although evidence of improvements is observed in Thalassemia, Hemophilia, dialysis and Kidney transplant patients but lots of steps are to be taken in favor of those who are involved in scarce situations such as cancer and MS patients. We will for the good of god fulfil this given task.
I will carry this ambition from cradle of instituting the foundation to the grave of rooting out rare and special disease. Till the happy days of witnessing otherwise helpless distressed patients.
With the divine help of whom helps the haplessness
Fatemeh Hashemi Bahrmani
I was asked to write a description about the evolution of the charity Foundation of special Diseases and the main point of view and policies it chosen.
To begin, the pleasure of helping patients formed in me when I was spending the fourth year of medical education in Dr. Gharib's children's section. In the harsh winter of that year, when 10 to 12 half-naked children were bed fasted in each room, every morning as I entered the hospital it occurred me, a child or two was lost the night before. This overwhelming tragedy led me toVisit the head of the section and explain the situation. I right away claimed I was ready to pay 100 tomans to prevent this brutal homicide of innocent children, and the ward doctors should be inspired and promoted to contribute.by that, this would help to afford warm clothes and preliminary needs of the children…Unfortunately was unceremoniously ignored by him…A week later I took my own Volkswagen to the department, field with children's clothes delivery. It was with the help of several cloth sellers. This memorable satisfying deed is always carried with me…With entering the field of rare and special disease and the fact that I didn’t complete this mission to aid compatriots as a doctor, not only constantly distressed me, but also the built the desire to initiate a charitable organization. That was then I got acquainted to Ms. Fatemeh Hashemi, through her prominent spouse Dr. Saeed Lahouti. Such charity organization was first suggested to be established. And this suggestion of mine reflected somehow to Mr. Hashemi, the President. In any country, the government alone is not able to resolve all the medical problems of special patients, except provided with the help of the individuals. Albeit, this will not be achieved unless through the charities. This proposal was approved and agreed and the president consented to initiate the construction.
Being at service of Ms. Fatemeh Hashemi, primary measures were taken. Such as determining the content of the constitution, founding members and dedicating one million and six hundred thousand Rials.Members were unanimous to name this organization as the charity Foundation of Special Diseases. with the devotion of Ms. Fatemeh Hashemi who days and nights spent her youth in this regard, the comprehensive and constructive participations of Mr. Hashemi, as well as the sincere support of Mr. Seyed Hossein Marashi the head of the Presidential Office, The sustainability of the foundation has become stronger and more effective every day more and more.
Dr. Hashem Jannatpour
In the name of God
If I was to mention some important achievements in field of social services after the triumph of the Islamic Revolution of Iran, it is assured that the structure of the health care system was expanded to the establishment of interconnected health care networks throughout Iran and the establishment of universities of medical sciences and health services. Due to the critical conditions in the country and the occurrence of the imposed war, it was vital to escalate the quality and quantity of medical services. During that time, the necessity of people’s right and demands was more intensified which led people to expect the highest efficiency in treatments and methods. Therefore, the extent and number of patients in all parts of the country required adequate support and insurance organizations. The establishment of the charity Foundation of Special Diseases and its support by the highest executive officials of the country is certainly the most important events of supporting patients by medical systems as a result of best utilization of the facilities. Although there is are still a long path to reach the ideal levels, this goal can be achieved with the help of authorities and people.
Looking forward to that day, happy anniversary.
Dr. Mohammad Farhadi Langroudi
Health is one of the greatest gift of god, and providing it to members of the society is the basic goals of advanced and developed societies to bring the best possible status to treat patients. Despite this thriving effort, there are several diseases that cause long-term disability and various medical, social and economic difficulties for patients and families due to being unknown and unidentified and also lack of specific and chronic treatment of the disease. Of course, people with such conditions, are classified as rare and specific patients in which differentiated from normal patients and are in vital need of multidisciplinary supports. The establishment of the charity Foundation of Special Diseases, which was carried out with the unlimited support of the fourth President of the Islamic Republic of Iran, Ayatollah Hashemi Rafsanjani. Based on these humanitarian purposes, with his daughters’ efforts, and all the participants, precious proceeding were reached.
Besmellah alrahman alrahimThe efforts and processes made in Foundation of Special Diseases as one of the non-governmental pioneer leaders is a flourishing example for non-profit charity foundations. The humanitarian wills and intentions of the founder and president, Ms. Fatemeh Hashemi, are admirable. The presence of prominent official members in the Board of Executors is genuinely considered as a support for this institution. but forming a strong community with peoples association, expanding it to even the farthermost parts of the country, gaining the trust of the government and Islamic Consultative Assembly consecutively was in account of honesty professional courtesy of Ms. Hashemi And her loyal companions.
As an influential non-governmental organization, exemplary, we are to be engaged in our role and destined to accomplish our missions with prospects:
- Proposing Plans in categories such as cultural Preparations, education, health and hygiene, medical. And economic to the relevant authorities for the approval of implementing laws and regulations related to government agencies and conserving patients' rights.- Challenging to increase the quota of special patients' budgets allocated by governments’ budget.- Organizing individual groups to enhance their effectiveness in participation in reaching the goals.- Supplying public awareness and cultures about these type of diseases among the society.- Stimulate, absorb, and accept domestic and foreign humanitarian aids which are in Islamic frameworks. - Constructing a relation with patients in the cultural, educational, social and economic fields
- Prevention- Remedies and Treatments- Education
Thalassaemia- Hemophilia- Chronic renal failure, dialysis, and hemodialysis- Kidney transplantation- EB- Diabetes - Cancer - MS- Autism
Established:Soodeh medical and treatment center (1995)Khaas medical center (1999)Bam medical and treatment center (2006)Shargh medical and treatment center (2007)The Medical Center of Diabetes (2009)Rafsanjaan medical and treatment center (2013)Karbalaa medical and treatment center (2015)Najaaf medical and treatment center (2015) Boroujerd medical and treatment center (2015)Shaahroud medical and treatment center (2015)
Under construction:Shargh hospitalCancer center of Research, education, prevention, treatments Kaavosh recovery centerGohare baaraan recovery centerBojnord medical and treatment center
1- International: Joining the United Nations Economic and Social Council Joining the Thalassemia International FederationJoining the International Federation of Kidney FoundationsJoining the International Society of Blood Transfusion 2- National:
Dedication of Financial aids to kidney donors in return of self-devotion commonly known as Isaar gift
Free of charge treatments provided for thalassemia, hemophilia and dialysis patients
Devising thalassemia prevention plans and mandatory before-marriage tests
Free of charge self-employed insurance for Thalassemia, Hemophilia, MS, Cancer, Diabetes and Dialysis patients
Liberating organ transplantation from brain dead patients
Free of charge liver transplantation
Establishing special disease sports federation
Constant increase in the number of special disease medical and treatment centers (in collaboration with the Ministry of Health, Universities of Medical Sciences and Charities, which has increased from 127 to more than 980 since the foundation's initiation)