Majdolen (Joleen) Istaiti completed her Bachelor of Science in Biology at Tel-Aviv University, Israel June 2017. In February 2018 she joined the Gaucher Unit and the pediatric Hematology-Oncology Unit, as a clinical study coordinator. The Gaucher Unit is the largest of its kind worldwide (over than 900 patients over 30 years). In 2019 she joined the International Working Group on Gaucher Disease (IWGGD) as the board secretary assistant, and in 2021, she gained her MBA degree in Pharma and Health System at the Ono-Academic College, Israel.
Her main research work on Gaucher disease (GD) focuses on chaperone therapy for both neuronopathic and non-neuronopathic GD and GBA-related Parkinson’s disease, digital health, patient-reported outcome measures, type IIIC, and different patients’ registries.
Joleen has been involved in all aspects of work related to patients with neuronopathic GD either coming from Israel, Palestinian authorities, and Jordan, since day one.
WHAT IS THE GARDIAN FOR ME?
The world focus on neuronopathic GD has been limited considering the importance and its relative high prevalence in the Eastern Hemisphere. So far, there are no registered treatments and little data on the natural history of these patients, with and without specific therapy for the non-neuronopathic features. Therefore, it is so important to have patients/physician’ led registry that will focus on the patients’ reported outcome and the quality of life of patients with these ultra-rare individuals and their families. Working together with the patients and their families and be part of the big effort to improve their lives is what GARDIAN is for me.