The National Date For Rare Disease Day Was Legislated As 8^th Esfand, 1399 equivalent in the Christian calendar 26^th 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 28^th 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.

Annual Meeting Abstract,  J Immunol Tech Infect Dis Vol: 7 Issue: 2

Hamid Reza Edraki

Rare Diseases Foundation of Iran (RADOIR)

*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

Keywords: Rare Diseases; Fetal MRI; Brain; Placenta

Article link

Author: Dr. Hamid Reza EDRAKI

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.

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.

International Universal Health Coverage Day 2020

Rare Diseases Europe (EURORDIS) & Rare Diseases International (RDI) have partnered to hold UHC4Rare Diseases Campaign 2020

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

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.

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 11^th Dec. 2020 .

RADOIR Joined  RDI’s 6TH Annual General Assembly and Membership Meeting in May 18^th, 2020

RADOIR News- RADOIR as Rare Diseases International (RDI) full member joined the webinar” 6TH Annual General Assembly and Membership Meeting” in May 18^th, 2020 .

Due to COVID-2019 pandemic, the6TH Annual General Assembly and Membership Meeting was held in May 18^th ,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.

RADOIR’s first medical committee was held in 2020 with delay due to COVID-2019 pandemic.  

Dr. Hamid Reza Edraki, scientific board member of SBMU & RADOIR’s managing director was awarded the Golden Rose for his glorious scientific activities and impressive medical services.

RDI has signed a collaboration agreement with WHO to start the journey towards a global network of centers of excellence for rare diseases

Dr. Mahdi Shadnoush, the head of management center for transplantation and special diseases at the Iranian Ministry of Health had a meeting session in Dec.2019  about the status of rare patients at the Spanish Rare Diseases Research Institute in Spain as per the follow ups and arrangements done by Rare Diseases Foundation of Iran.