RADOIR Joined RDI’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.