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 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.
The National Strategic Plan for Rare Diseases of Iran was approved at the Supreme Council of Health and Food Security leading by Dr. Saeed Namaki, the minister of health and medical education.
RADOIR News- The Iranian National Strategic Plan for Rare Diseases which was collaboratively developed by Rare Diseases Foundation of Iran (RADOIR), Tehran University of Medical Sciences (TUMS), the collaboration of local and international experts researchers and also with the immense support of the member of parliamentary health and treatment commission, Dr. M.A. Mohseni Bandpei as well as more than 70 members of the Iranian parliament, was certified and approved by the Supreme Council of Health &Food Security leading by Dr. Saeed Namaki, the minister of health and medical education of Iran.
The main and significant vision and mission of this national strategic plan is the prenatal screening to prevent with prompt diagnosis of the birth defects caused by the rare diseases and to solve the pharmaceutical and treatment problems of the rare patients in the country.
Dr. Hamid Reza Edraki, RADOIR’s managing director emphasized, “The main goal and objective of developing the strategic plan for rare diseases of Iran is to discover the treatment solutions and to alleviate the pain and suffering of the patients living with rare diseases and their families in Iran.” He also indicated that all the ministries and organizations in charge of educational, cultural and social approaches, will be notified as per the president of Islamic Republic of Iran, Dr. H.Rouhani, instruction.
*Corresponding Author : Dr. Hamid Reza Edraki Rare Diseases Foundation of Iran (RADOIR), Iran Tel: +98-912-130-1258, E-mail: dredraki@gmail.com
Received: August 16, 2018 Accepted: September 27, 2018 Published: October 01, 2018
Citation:Edraki HR (2018) Fetal MRI in Early Diagnosis of Rare Disease in Brain. J Immunol Tech Infect Dis 7:2. doi: 10.4172/2329-9541.1000163
Abstract
A practical hands-on approach for using MRI techniques is provided to promote further fetal pathological conditions. This method of prenatal MRI diagnosis is done through the available literature revision. Apart from the findings and artifacts and numerous high-quality illustrations, the implications of fetal MRI based on medico-legal and ethical viewpoints has increased significantly
Managing Director at Rare Diseases Foundation of Iran (RADOIR)
The state of medical imaging in detecting COVID-19 patients is of high value. The CT scan without contrast media injection as the proposed method in diagnosis during treatment. In some cases, HRCT of lung references is recommended for higher penetration and finer levels, but epidemic and pandemic as well as the high range of X-ray exposition, applying the same method is to be investigated.
The most common sign and symptom of COVID-19 will be ground glass opacity (GGO) of lowers lobes of lungs and specially posterior and lateral segments in lungs in neighboring of chest thoracic wall or pleural cavity which is usually observed 5 days after disease appearance. Since the volumetric mass of the virus is very high and penetrates in lower areas and ends up to infectious and inflammatory changes.
Apart from this important symptom, there are other signs as haziness, consolidation, fibrotic band, crazy paving, speculation of the lesion.
The Assessment of Medical Imaging in COVID-19 Diagnosis & Patient Evaluation
In COVID-19 patients, the pleural effusion or lymphadenopathy are rare, active haziness of developed lobar will turn into bronchopneumonia and interstitial pneumonia which are finally called as white lung.
The simple lung CT scan and not HRCT, the amount of radiation and shorter time left to HRCT. In some centers, 3D methods are also used which are of more value rather than 2D’s. During CT scan, the patient takes a deep breath (deep inhale) and keeps till the end of test and delicate axial cuts later on. The simple radiography of lungs (even digital) is of no value in diagnostic pulmonary involvement with COVID-19.
In the following table, the diagnostic protocol of COVID-19 in CT scan confirmed by The Radiological Society of North America (RSNA) and National Institute of Health (NIH), has been presented.
The Assessment of Medical Imaging in COVID-19 Diagnosis & Patient Evaluation
RADOIR News– On 12 December 2012, the UN General Assembly (UNGA) endorsed a resolution urging countries to accelerate progress toward universal health coverage (UHC) – the idea that everyone, everywhere should have access to quality, affordable health care – as an essential priority for international development. On 12 December 2017, the United Nations proclaimed 12 December as International Universal Health Coverage Day (UHC Day) by resolution 72/138.
International Universal Health Coverage Day 2020
International Universal Health Coverage Day 2020
Each year on 12 December, UHC advocates raise their voices to share the stories of the millions of people still waiting for health, champion what has been achieved so far, call on leaders to make bigger and smarter investments in health, and encourage diverse groups to make commitments to help move the world closer to UHC by 2030.
#UHC4rarediseases
RDI and EURORDIS have partnered to develop the Universal Health Coverage for Rare Diseases (UHC4 Rare Diseases) campaign. The Campaign aims to enable patient organization and the public to call for Universal Health Coverage policies and programs that include rare Disease. The campaign will be held on 11th Dec. 2020 .
RADOIR JoinedRDI’s 6TH Annual General Assembly and Membership Meeting in May 18th, 2020
RADOIR News- RADOIR as Rare Diseases International (RDI) full member joined the webinar” 6TH Annual General Assembly and Membership Meeting” in May 18th, 2020 .
Due to COVID-2019 pandemic, the6TH Annual General Assembly and Membership Meeting was held in May 18th ,2020 together with Dr. Mahdi Shadnoush, the head of management center for transplantation and special diseases at the Iranian Ministry of Health and Dr. Hamid Reza Edraki, RADOIR’s managing director .
There were 92 members from the world who attended the webinar.
The agenda for the webinar has been as per followings:
Leveraging Universal Health Coverage to advance rare disease policy:
Celebrating the inclusion of rare diseases in landmark United Nations
Political Declaration on UHC
Advocating for the integration of rare diseases in national policies and regional UHC policies
Global collaborations to achieve Universal Health Coverage:
Memorandum of Understanding (MOU) between RDI and the World Health Organization
Towards a collaborative global network of centres of excellence for rare diseases
Towards an international framework for an operational description of rare diseases and key prevalence and incidence figures.
Working with WHO to improve access to rare disease medicinal products:
WHO Essential Medicines List and WHO Essential in Vitro Diagnostics List
The attendees from RADOIR discussed about the imposed sanctions by USA on the orphan drugs importation which directly threatens the life of rare patients especially rare children.
