At the 24th Medical committee session of RADOIR, two rare diseases: “ Hereditary Angioedema” and “Hyperoxaluria Type 1” based on the rare patients files registered at SABNA (RADOIR Registry System), were approved by RADOIR specialists and medical doctors due to the low prevalence and genetic origin.
World Patients Alliance is the umbrella organization of patients and patients’ organizations around the globe which provides the platform to empower and raise the patients’ voice for the provision and access to safe, quality and affordable healthcare.
RADOIR News- Rare Diseases Foundation of Iran (RADOIR) has achieved WPA membership. “World Patients Alliance” has started its mission in 2006 in USA and works toward ensuring patients have an active role to play in all the stages of healthcare that include planning, provision, monitoring, research and evaluation of health services. WPA represents patients from all world regions and across all disease areas. WPA Partners are :
- World Health Organization
- United Nations
- World Health Professions Alliance
- World Medical Association
- National Institute of Health
- International Pharmaceutical Federation
- International Hospital Federation
- Agency for Healthcare Research and Quality
- NCD Alliance
- Federal Drug Administration
- European Medical Association
- Center for Disease Control
- International Medical Corps
- Global Health Council
- International Red Cross
- International Diabetes Federation
Approved by The Iranian Secretariat of the Supreme Council of the Cultural Revolution
The National Rare Disease Day in Iran approved to be annually celebrated on the 8th Esfand to honor the Iranian rare patients.
RADOIR News- The managing director of Rare Diseases Foundation of Iran (RADOIR), Dr. Hamid Reza Edraki, announced that,“ At 841 official assembly of the Iranian Secretariat of The Supreme Council of The Cultural Revolution, the 8th of Esfand (the last month of the Persian year) was approved to be denominated as the National Rare Disease Day in Iran and recorded in the official Persian calendar.
RADOIR’s public relations department reported that Dr. Edraki has emphasized due to the fact that rare diseases are seriously undiagnosed and long term diseases, registry of this day in the Persian calendar has a deep impact on the public raising awareness about such disease. He indicated that RADOIR was officially established on 30th Oct., 2009 on the occasion of the birth of the 8th Imam of Shiite Moslems, the great deceased Imam Reza (peace be upon him), with the aim of supporting the rare patients of Iran. Annually, 94 countries in the world are celebrating the rare disease day during the first 10 days of February equal the last month of the year in the Persian calendar.
Due to the high prevalence of rare diseases in Iran and despite of no public raising awareness for a long time, the Rare Diseases Foundation of Iran has been able to collect the different types rare diseases and the patients’ files as well as to run the rare patients online registry system as “SABNA” and also to develop the Iranian strategic plan for rare diseases since 2018 which all resulted in successful means of awareness, support and control in healthcare system for the rare diseases patients and communities in the country.
RADOIR’s managing director added as well,“Finally, with the immense supports and follow ups by the Iranian parliament members especially Hujjat- Al- Islam Mousavi Larakani, the deputy head of social collaborations of Iran’s Ministry of Interior Affairs, Dr. Zahra Abedini, the head of management center for transplantation and special diseases at the Iranian Ministry of Health, Dr. Mahdi Shadnoush and the secretary general of General Culture Council of Iran, Dr. Mavalizadeh as well as some of the respected ministerial authorities, RADOIR received the approval of registering the National Rare Disease Day as the Iranian official occasion for celebration.
To be mentioned that there are 344 types of rare diseases and disorders registered in Iran which have high pharmaceutical cost and treatment expenses without insurance facilities for the rare patients of the country. Hereby, I sincerely congratulate this national occasion to all the Iranian rare patients and I do hope our success in recording such day as rare disease day in the Iranian official calendar, will help us to efficiently identify the rare diseases and disorders, develop their prevention and further support of the relevant communities.”
The president of Rare Diseases Europe, Terkerl Anderson and EURORDIS Chief Executive Officer, Yann Le Cam , have sent an official letter of support to the Ministry of Health of Iran and other relevant organizations as well. They have called for supporting the Iranian rare patients and Rare Diseases Foundation of Iran (RADOIR) as the sole non-governmental advocacy organization in order to solve pharmaceutical and treatment as a part of the national strategy to achieve Universal Health Coverage (UHC)
RADOIR’s public relations reports that EURORDIS president and CEO have emphasized on the economical, social, cultural and educational challenges with which the rare patients are faced . Also due to the high cost of living and care, lack of access to orphan drugs because of the imposed sanctions and political issues, the Iranian rare patients and families are suffering, painfully.
They have also indicated,” It is EURORDIS’ belief that health issues should always supersede political issues, in accordance with the Universal Declaration on Human Rights and in line with the more recent United Nations Political Declaration on Universal Health Coverage. The vulnerabilities of people living with a rare disease are multiplied in the face of disrupting factors. For instance, the COVID-19 crisis has negatively impacted the lives of people with a rare disease. Even in the absence of results from such a survey in Iran, it is reasonable to consider a similar negative impact from COVID-19 for families living with a rare disease on their access to care and treatments in Iran.”
EURORDIS acts as the voice of people living with a rare disease, which accounts for 300 million worldwide and estimates 3-4 million in Iran . Terkel Anderson and Yan Le Cam have mentioned that access to medicines is a major challenge for people living with a rare disease, as there is no cure for the majority of diseases and few treatments available. Still, there are a number of medicines with market indication for about 5% of rare diseases, and there are a number of others with ‘off-label’ use that can be used for around 25% of these types of diseases.
The new proclamation by MOH-Iran on vaccination prioritization for some of difficult-to-treat diseases has made rare diseases communities concerned which are more vulnerable. The rare communities has called for fair COVID – 19 vaccines allocation and distribution and objected to the discriminatory method of prioritization.
RADOIR News- Due to the high risk vulnerability of the rare patients against COVID-19, the representative of Icthyiosis, EB, NF, Alopecia, Miyastini Gravis, Autoimmune Deficiency, PKU, Osteogenesis Imperfecta communities have objected to vaccination discrimination of vaccination prioritization.
According to the declaration by deputy treatment of the ministry of health in Iran on 16th March, 2021, a group of patients living with specific diseases like Hemodialysis, Peritoneal dialysis, Hemophilia, Thalassemia, MS, MPS, CF, SMA, Autism, organ transplantation, cancer and PID recognized as of high risk group of diseases with vaccination prioritization among which only MPS, SMA and PID are considered as rare diseases. Based on the recent statistics by the medical committee of the Rare Diseases Foundation of Iran (RADOIR), there are 342 types of rare diseases identified which have no access to orphan drugs and of high costs and at the same time the expenses are too high and also have unclear vaccination plan due to their status.
There is no specific protocol for the methodology of prioritizing the rare patients.
Dr. Hamid Reza Edraki, RADOIR’s Managing Director declared, “ By now we have had lots of correspondences with deputy treatment of MOH and FDA in Iran regarding prioritizing the rare patients according the national vaccination program. Yet no result and the difficult-to-treat diseases are included in the program with prioritization. No specific protocol for the methodology of prioritizing the rare patients! The voice of some unregistered rare communities are not heard even that of a few of them.”
He has also requested to provide rare patients with the vaccines and added that autoimmune deficiencies and genetic disorders are the common specifications among the rare patients and there should be a serious attention and consideration, accordingly.
Lifting Therapeutic Abortion Leads to Increase in Illegal and Unsafe Abortions
The legal abortion for fetal with genetic disorders law approved by the Guardian Council in 2005, has been newly cancelled and voted pro for lifting at the The Islamic Consultative Assembly on 16th March 2021 and is still pending at Guardian Council of Iran to be finalized. Lifting therapeutic abortion law has been contested by the medical doctors, scientific researchers and experts and advocacy NGO’s. It is aimed at the rejuvenation of population and supporting the families living with rare diseases.
Yet the main paradox caused by the increasing number of rare and disabled patients does not only decrease the power of the fertility and fecundity in the country, but imposes the financial burden on the families living with these types of diseases, health care system and the society led to irrecoverable damages on the economy and production in the country.
“The abortion law repeal is a social crime and will end up to population disability since each birth defect brings high expenses for the families and society in general.”, Prof. Dariush Farhud, the father of genetics in Iran, emphasized.
He added, “ Adopting an abortion permission at the end of 18 weeks of pregnancy as an excuse for undue or extreme physical hardship by mother, is totally dependent on the specific conditions. For example abortion certificate is not issued for hearing disorders, Achondroplasia, although all the disabilities will be resulted in many problems as depression, high cost of medications, treatment and unemployment.” Prof. Farhud also warned about the increase of illegal and unsafe abortions by illegal inexpert with no right facilities and this endangers mothers’ lives.
By now, about 356 types of rare diseases have been identified at the Rare Diseases Foundation of Iran (RADOIR) and according to the statistics released at the same foundation, there is the lack of access to orphan drugs and even in case of access to the existing ones, the costs are too high and unaffordable. Besides not having insurance coverage for the rare and disabled patients, is another problem as well as not having budgets allocation in the health care system of the country .
Dr. Hamid Reza Edraki, RADOIR’s managing director, explained,” In addition to the economic pressure and financial burden, the birth defect of each newborn baby, will be followed up to mental and psychological problems for the rare patients and their families. Over the course of decades, RADOIR has tried to promote the quality of life of its rare patients, but unfortunately the education system, healthcare and economic challenges have not been responsive to the needs of the patients living with rare diseases. The question is : Have those agreed with this policy thought of how to meet the rare patients’ pharmaceutical needs, treatment and their social and educational issues?
Healthcare NGO’s like rare diseases and difficult-to-treat communities have objected upon their mission to prevent the birth of babies with genetic disorders.
The head of NF Society in Iran, Mr. Hasan Yazdani says that the diagnosis of NF which has several types, is only possible in perinatal. Some of the Neurofibromatosis patients should use special orphan drugs monthly and the average cost is about Rls. 10,000,000 per month while other types of such disease need hard and permanent surgeries depending on the tumorous area which have different costs, accordingly.
Also Ms. Sarah Nouri, the head of MPS (a rare metabolic disease) community emphasized, “ MPS patients should receive 1 dose enzyme and specific orphan drugs per month which all are mostly inaccessible or highly expensive . The delay in receiving injection for some MPS children has ended up to their death and the rest will suffer from painful respiratory disorders and other problems as well.
In spite of multilateral sanctions pressure on Iran, lack of insurance supports, incurability of the rare disease, severe educational and cultural problems at the time being, what is the logical and deductive reasoning of lifting Abortion Law for Fetal Genetic Abnormalities?
One of the rare patients of Iran participated in the campaign of 2021 Rare Disease Day with the support of Rare Diseases Foundation.
RADOIR News- Upon the invitation by EURORDIS & RDI’s for the rare patients campaign of rare disease day heroes in 2021, we at RADOIR, introduce one of our rare teenagers, Reza Shirpoor, 13 years old with Cystinosis to join the campaign.
His portrait and life story have been disseminated in all the publicities of rare disease day. For further information about Reza’s story, you can try the link:
On 26th February 2021, Rare Diseases Foundation of Iran held online celebration of rare disease day in Iran within 1 hour due to pandemic Covid-19. Rare Is Many… Rare Is Strong… Rare Is Proud!
26th February registered as the official annual “Rare Disease Day” in the Iranian calendar.
RADOIR News- 26th February (8th Esfand) was approved to officially mention “Rare Disease Day” in the Persian calendar by the public culture Council of the Ministry of Culture & the Islamic Guidance with immense support of Hojatollah Al Moslemin Largani, member board at the Iranian parliament, Dr. Abbas Salehi, the head of public culture council, Ministries of Interior Affairs, Education, Labor & Social Welfare.
The Persian calendar will date 26th February as the official Rare Disease Day in Iran next year. Also the Rare Diseases Foundation of Iran participates in the events and campaigns on the World’s Rare Disease Day organized by EURORDIS at which 90 countries of the world celebrate this day on 28th of February, annually.
RADOIR’s international counterparts count this action as one of the most significant achievements by this foundation
RADOIR medical committee confirmed Atresia Choana as a rare congenital disorder
RADOIR News- At the 24th session of RADOIR’s medical committee, 131 patients’ files were checked and the rare congenital disorder, Atresia Choana, added to list of rare diseases and disorders.
Choanal atresia is a congenital disorder where the back of the nasal passage (choana) is blocked, usually by abnormal bony or soft tissue (membranous) due to failed recanalization of the nasal fossae during fetal development. It was first described by Roederer in 1755.
By the time being, there are 355 rare diseases and disorders have been registered in SABNA.
The Key Event Of Rare Disease Day Submitted In The Iranian Calendar As A National Day 8th Esfand Of Each Year
The National Date For Rare Disease Day Was Legislated As 8th Esfand, 1399 equivalent in the Christian calendar 26th Feb., 2021
RADOIR NEWS– Due to the long time follow ups by Rare Diseases Foundation of Iran(RADOIR) and After legislative process at the Iranian Public Culture Council of the Ministry of Culture and Islamic Guidance and the high council of Cultural evolution and the Iranian parliament, it was approved to mention a date for the rare disease day in the Iranian calendar for the first time.
Each year in 90 countries of the world, the rare disease day is celebrated for the rare patients and their families and all the rare diseases organizations, NGO’s, alliances and centers participate in this event on 28th February. The rare diseases foundation of Iran has taken part in Rare Disease Day campaign and held a symposium with the attendance of governmental authorities from the ministries of health, education, labor & social welfare, interior & foreign affairs , artists, sportsmen, rare disease advocates and ambassadors and of course pays tribute to the rare patients and their families since 2009.
There are about 6000-8000 rare diseases identified in the world while in Iran, around 344 rare diseases have been registered and confirmed by RADOIR’s medical committee. Naming a national rare disease day and introducing these type of diseases have an efficient impact on the calculation of the number of people living with rare diseases.