AUGUST 2020

3 AUGUST 2020 
With great sadness, we read the announcement of the passing of Professor Paul Casaer on the website of the International Child Neurology Association ICNA

With great sadness, we read the announcement of the passing of Professor Paul Casaer former ICNA President & Emeritus full Professor in Paediatrics-Paediatric Neurology, KU Leuven, on 30 July 2020. link
Born on 22nd September 1940 in Belgium, Professor Casaer made many major contributions to the field of paediatric neurology. But the AHC patient and scientific community will always remember him with admiration and gratitude for the fundamental role that he played in assessing the efficacy of Flunarizine as chronic treatment for this rare and complex neurological disease. Thanks to the positive results of his double-blinded international trial with Flunarizine published in 1987, the quality of life of so many AHC patients has been improving since then all over the world. link
Prof. Casaer also contributed to the ENRAH Project (2005 -2009) for the creation of the European Registry for AHC and to the international collaboration that led to the discovery of the AHC-causing mutations in the ATP1A3 gene (2012).

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NOVEMBER 2019

30 November 2019 
DATA COLLECTION STARTED FOR THE IAHCRC INTERNATIONAL STUDY OBSERV-AHC

Data collection for the OBSERV-AHC Study (a Study of the IAHCRC Consortium) started last September 1st, in Spain, France, UK and USA, supported by their national patient associations. In Italy, they are still waiting for the approval of their Ethics Committee, but they too are ready to start as soon as they obtain it.
Data will be collected and entered in the IAHCRC-CLOUD Platform by the data-entry clinicians during the neurological visits to the patients organized in collaboration with their supporting patient associations.
The caregivers of the enrolled patients are offered the possibility to record their AHC episodes directly in the IAHCRC-CLOUD Platform, through its Mobile App, so that also their data can be included in the Study.

	Prof. Mohamad Mikati presenting the OBSERV-AHC Study at the International Symposium on AHC organized by the Spanish Patient Association AESHA and the Reference Center for AHC at the San Juan de Deu Hospital in Barcelona, 9 February 2019		Prsentation of the OBSERV-AHC Study at the Family Meeting of the Italian Patient Association in Milan, March 2019
	Family Meeting for the start of the data collection for the OBSERV-AHC Study, organized by the Spanish Patient Association in Barcelona, September 2019		Family Meeting for the start of the data collection for the OBSERV-AHC Study, organized by the French Patient Association in Lyon, October 2019
	Working meeting organized on the occasion of the 8th Symposium on ATP1A3 in Disease (Reykjavik, Iceland, 3 October 2019), about the start of the data collection for the OBSERV-AHC Study. Standing, Prof. Mohamad Mikati, Scientific Coordinator of the Study; seated, the data-entry clinicians of the Centers participating in the Study, in France, Spain, Italy, UK and the United States.		The Mobile App through which a caretaker can record the patient's events in the IAHCRC-CLOUD Platform

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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.