5 Best Practices for Engaging with Patient Advocacy Groups
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.
From a Mother’s Sacrifice to Advocating Rare Diseases
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.
RADOIR and IUMS IN Scientific Collaboration
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.
Genomics of Rare Disease 2019-UK
6th International Conference on Tropical Medicine and Infectious Diseases
10th Congress on Rare Diseases and Orphan Drugs 2019
RADOIR and TUMS Scientific in Collaborative Partnership
In order to establish R & D collaborative committee on the scientific research prioritizations for the rare patients’ needs, a meeting session was held together with RADOIR & TUMS authorities.
9th World Congress on Rare Diseases and Orphan Drugs 2019
RADOIR & ROYAN Institute Begin Their Collaborative Partnership
Rare Diseases Foundation of Iran and ROYAN Institute held a meeting session on the means of scientific research collaboration in the field of rare diseases and genetic disorders on Wednesday 2nd Jan, 2019.