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What can AMRC members do to ensure the EU Data Protection Regulation does not stop valuable health research?

MEPs have agreed changes to the EU Data Protection Regulation which could hinder health research across Europe. But this isn't the end of the process; the Regulation will now be discussed by MEPs, the Council and Commission offering further opportunities to make changes.

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The Macular Society is a national charity dedicated to finding a cure for macular disease and supporting people with it. We fund medical research and offer free information and support to anyone affected by macular conditions - the cause of half of all registered sight loss in the UK. Our 16,000 members make us the biggest patient group in the sight loss sector and the voice of people with macular disease. There are around 300 Macular Society groups around the UK and beyond.

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To undertake and support the conduct of world class research that enhances the quality of life through improved treatments, rehabilitation and prevention of complications following spinal cord injury.

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Action for A-T is a medical research charity committed to funding high quality research projects that have the potential to advance our understanding of A-T and lead to treatments and cures. A-T (ataxia-telangiectasia) is a rare, genetic degenerative disease of childhood, which affects multiple systems of the human body. The charity is exclusively dedicated to funding scientific and medical research into A-T; as well as working to drive research and awareness of the condition.

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We are the only UK charity solely dedicated to funding SMA research; furthering the understanding of the disease, finding potential therapies and developing centres of excellence that attract world-class scientists to SMA research. We also concentrate on translational research, by funding projects which speed progress towards clinical trials. This includes better collection and analysis of SMA patient data and the development of reliable measurements that can be used to assess how patients respond to potential new treatments in clinical trials.

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Brain Tumour Research exists to raise the awareness of and grow the funding for scientific research into brain tumours and improve outcomes for brain tumour patients. We are the only national charity in the UK that is dedicated to granting 100% of its funds to continuous and sustainable scientific research into brain tumours and are a leading voice in this country calling for greater support and action for research into brain tumours.

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Clarivate Analytics combines expertise with technology to deliver solutions that guide you through the research ecosystem supporting your role from start to finish. With our tools, search and discover, author and collaborate with a range of solutions for reference management, publish, manage and evaluate. Clarivate Analytics, formerly the IP&Science business of Thomson Reuters, is the world’s leading source of intelligent information for businesses and professionals.

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