Following the vote on Thursday 23 June 2016 of the United Kingdom to leave the European Union, our Chair and Director of Genetic Alliance UK, Alastair Kent OBE said:
“Membership of the EU has generated significant benefits for patients and families with rare and genetic diseases. The UK Strategy for Rare Diseases, Orphan Medicinal Products Regulation, European Reference Networks and the International Rare Disease Research Collaboration are only a few examples of the added value that has been generated through transnational collaboration made possible as a consequence of our membership of the EU. This is why Genetic Alliance UK was unequivocal in advocating its support to remain in the EU. Being part of a community of 500 million has pushed rare and genetic diseases to prominence in the research and health care agenda. We were therefore disappointed by the referendum result.
It is important to remember that for the medium term future we will stay part of the EU and that there will be no immediate change affecting our community. We will keep our members informed whilst we wait for the dust to settle and for a clear future to develop. Throughout this time, there will be a need for a strong and articulate voice working to protect the interests of patients and families with rare and genetic diseases. Genetic Alliance UK will work within the political, policy, research and health service delivery environment to maintain the visibility and the priority that should be afforded to meeting the needs of patients and families with rare and genetic diseases. We will continue to be a committed advocate on behalf of our members and the individuals and families that they represent and support. We will be a strong and focused presence, speaking truth to power in government, in parliament, in research, health care and in society so the voice of individuals and families is heard in the settlement of the outcomes of this referendum.
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