RDOIR Deputies cordially hosted and met with its rare patients societies on Saturday 16th Feb., 2019

10th international congress on the occasion of Rare Disease Day by believing in the theme ‘’RARE but not ALONE!’’ in order to sympathy, supporting rare patients as well as presenting RADOIR’s lastest scientific, training and social achievements which will be held at Razi International Conference Center (RICC)on the March 2nd , 2019.

Screening is one of the most significant factors in prevention of non-communicable diseases as well as rare diseases.

By Ed Miseta, Chief Editor, Clinical Leader

Patient recruitment has always been challenge for companies conducting clinical trials. Knowing how to properly engage with advocacy groups can determine whether they will treat you as a trusted partner or a necessary evil.

After adapting with her daughter’s disease for 13 years, Jen O’Connor as a rare diseases supporter, required the government to protect them. Her 18 years old daughter, Sydney, could not talk and walk during these years but now through a correct diagnosis and treatment, she enables to run and talk. Her mother’s attention caused the detection of this disease’s mystery which caused the diagnosis of 300 cases similar to her girl.

In order to expand scientific, training and research collaboration, exchanging facilities, information and data mining capacity, RADOIR and IUMS signed a collaborative partnership MOU on Monday Jan. 21, 2019.

http://radoir.org/en/wp-content/uploads/2019/01/GRD-2019-Genomics-of-Rare-Disease.pdf