MARCH 2019

27 March 2019 
ELECTION OF THE IAHCRC SCIENTIFIC COORDINATORS FOR THE BIENNIUM 2019 - 2020

Last March 27^th 2019, during the General Assembly of the members of the IAHCRC Consortium, the results of the election of the Scientific Coordinator and Deputy Coordinator for the biennium 2019 – 2020 were communicated.
Prof. Mohamad Mikati (AHC Clinic at the Duke University School of Medicine, Durham, NC USA) officially settled as Scientific Coordinator of the IAHCRC Consortium, and Prof. Alexis Arzimanoglou (Neurology Department at the University Hospitals of Lyon, France) officially settled as Deputy Coordinator.
Many sincere thanks to both of them for accepting to remain as Scientific Coordinators, to continue their precious action in making the Consortium more stable and more and more effective.
With their scientific coordination and the contribution from all its members, the IAHCRC Consortium will surely play a key role in these next two years, for the progress of the collaborative research on AHC and all the ATP1A3 diseases, towards the final goal of an effective treatment and a better care for the patients.
During the General Assembly, Prof. Mikati gave an update presentation about the OBSERV-AHC Study; the IAHCRC Data Manager Rosaria Vavassori presented an update about the IAHCRC-CLOUD Platform, currently used for the data collection for the OBSERV-AHC Study and for other Studies and Projects already planned.

SEPTEMBER 2018

17 September 2018 
PRESS CONFERENCE FOR THE PRESENTATION OF THE PROJECT IAHCRC-CLOUD PLATFORM
a service for the international research on AHC and the ATP1A3 diseases

Tuesday October 30 2018, 3.30pm
I.E.ME.S.T. Institute www.iemest.eu
via Michele Miraglia, 20 – Palermo, Italy

Palermo, 17 September 2018
The President of the Euro-Mediterranean Institute of Science and Technology (I.E.ME.S.T.) Bartolomeo Sammartino communicates that on Tuesday October 30 2018, at 3.30pm, the press conference will take place at the headquarters of the Institute (via Michele Miraglia, 20 – IT Palermo), for the presentation of the Project “IAHCRC-CLOUD Platform”, aimed at establishing an international platform for the data collection and sharing serving the collaborative studies of the IAHCRC Consortium.
The technical and ethical aspects will be presented, as well as the innovative features of the IAHCRC-CLOUD Platform, making it a Second Generation Rare Disease Registry, implementing the principles and methods of patient engagement and platform cooperativism.
The current studies of the IAHCRC Consortium using the Platform will also be presented; among them, the longitudinal Study OBSERV-AHC, coordinated by the Division of Pediatric Neurology - AHC and Related Disorders Program of the Duke University in Durham, NC USA. In addition, some anticipations will be given on future developments already foreseen for the Platform, to make it an open, scalable and adaptable tool for any other rare disease.
Please confirm your participation via email to This email address is being protected from spambots. You need JavaScript enabled to view it. by Friday October 26 2018.