H18 Care4rare.net – platform for research institutions and the hd-community


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Abstract

The non-profit organization care4rare.net gemeinnützige UG is a company registered at the district court Ulm, Germany. The organization promotes the following purposes:Promotion of science and researchPromotion of public healthPromotion of education and vocational trainingVision: The vision of care4rare.net is to ensure the promotion of science and research through service offerings while generating a comprehensive care network for rare diseases with focus on Huntington’s Disease. It provides a platform for information, training and seminars as well as a crowdfunding possibility for project financing.In this context, the organization has two missions:Services for research organizations and networks:The administrative and monitoring supervision of studies in the field of rare diseases places special demands on the staff of the respective institutions. Both, administrative coordination of studies and medical documentation have to follow strict guidelines. Most employees can only be hired for a limited time, making recruitment even more difficult. The care4rare.net helps exactly in this field and offers services through the experience and its international employee network. The care4rare.net employs qualified people with experience and acts directly as a service provider with the contracting research institution or network.Through partnerships with the centers of excellence for Data Science and Business Analytics at the University of Applied Sciences Neu-Ulm and Business Development and Consulting, the care4rare.net also offers services in the area of data mining projects, SWOT analysis, potential and process analysis, project concept development, fundraising and consulting.Civil Society Engagement:The care4rare.net works basically not profit-oriented. However, the organization promotes with positive cash balance from various activities patient organizations, research institutions or similar non-profit carriers in accordance with the statute. Also own purposes are realized with the possible profits, as for example working group meetings, conferences, Summercamps etc.The care4rare.net also provides a free crowdfunding portal for those affected by rare diseases, in which projects initiated by the community can be posted to raise money.

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