Beleidsplan Nina Foundation 2013-2016

II.BLong term goalsFor the long term the mutual goals would be:the joint funding of new research projects in Europe;setting-up a network of multiple European scientists and parent organizations in orderto be eligible for funding by the European Union;institutionalizing our cooperation to a larger extent by (for example) setting-up aseparate legal entity after our cooperation has proved to be successful andsustainable.III.General overview of the envisaged structureIn brief, the envisaged structure can be described as a project-based cooperation on fundingresearch projects on Angelman Syndrome.As the available funds of the participating parent organizations may vary from time to time,the envisaged cooperation will be kept flexible by:not having the obligation to contribute funds annually;having the ability to join the cooperation per project, without a financial threshold(minimum contribution); andcreating a call stating a maximum amount of the available funds, but without theobligation to award this complete amount.Our cooperation will focus initially on the funding of current research projects, but in duecourse we will start funding new research projects as well. In order to receive fundsresearchers have to apply by means of a two-step-application-process. The first step is tosend in a two-pager with a general overview of the envisaged project, the required funds, etc.These two-pagers will be assessed by our European scientific advisory board on the basis ofcornerstones, to be determined by the European scientific advisory board. After theaforementioned assessment, the European scientific advisory board will invite one or more ofthe applicants to send in a more detailed overview of the envisaged project in order todetermine which projects are eligible for funding. Finally, the participating parentorganizations will decide which projects they will fund.The progress of the funded projects will be monitored by means of (among others) regularreporting, in order to assure the funds are used in a valuable and sensible way.Although initially the cooperation will not take place by means of a special legal entity,created for this purpose, we felt that in the light of global recognizability the cooperation ofthe participating parent organizations should take place under one name. As the cooperationwill - at least at first - lack legal personality, the name should preferably not includereferences to any legal entity (such as a foundation or association). A suggestion for thename of our cooperation could be: Angelman Syndrome Alliance.Please note in this respect that although we would be acting under the joint name ofAngelman Syndrome Alliance, the alliance as such will not be a new European organization.Within our cooperation the Nina Foundation (due to the independent character and uponrequest of the European scientific advisory board) will fulfill a coordinating role. In theupcoming period the Nina Foundation will discuss the contents and scope of this roleinternally and draw-up a description thereof in more detail.IV.Overview of the structure in more detail16