The beginning of the preparation for joining Rare Diseases Foundation of Iran into the world community of Rare Disease Patients
Finally, a dream of late Dr. Davoudian, the Founder and Managing Director of Rare Diseases Foundation of Iran comes true in order to improve the quality of life for patients with rare diseases and their families. Mr. Denis Costello, Web Communications Senior Manager & RareConnect Leader at Eurordis ( Rare Diseases Europe) traveled to Tehran on November 3rd, 2017 for training technical experts from the foundation to launch the Rare Connect for Iranian patients in the very near future.
According to the Rare Diseases Foundation of Iran, Rare Connect is a platform for Rare Diseases Patients, their families, specialists, healthcare professionals and patient organizations to be informed about the latest medical and diagnosis Innovations.
In this program, it is also possible for a person to enter a message in one of the common European languages (in the future in Farsi ) into conversation groups and receive an appropriate response from the group manager or other members.
It has been determined to add Farsi for the use of Iranian Patients since detailed negotiations had conducted between RADOIR and EURORDIS in 2016.
Providing initial application for Farsi language is done by Eurordis and then Mr. Costello entered Iran for training the experts.
At the moment, the translation of the program into Persian has begun and is predicted to be operational in the next month.
The most important results from referring patients to this site will be facilitating the communication of patients and their families intheir mother toungue, to obtain their information through sharing with others, and prevent waisting their time and money. The program will be accessible through the website of the Rare Diseases Foundation of Iran.
