Has started a blog where real-life experiences of people with rare diseases are shared. The link to the blog is Here if you would like to blog about your own experiences of rare disease please email firstname.lastname@example.org
Recently a study was published by the University of Manchester and Central Manchester University Hospitals NHS Foundation Trust (CMFT) about public knowledge of and interest in the process of medicines research and development. The public in six European countries (including the UK) were surveyed. The full article can be found here: Link
On Friday 26 June NHS England published their response to the “Investing in specialised services” public consultation. The consultation looked at NHS England’s set of ‘principles’ on which future decision making about the investment in specialised services will be made. You can also find NHS England’s response to the public consultation here.
Thank you for your interest in the campaign to make 2019 the European Year for Rare Diseases. Over the last 20 years, EURORDIS and the wider rare disease community have advocated to raise awareness and to improve the lives of people living with a rare disease. We continue to do this and achieve success in our efforts.
In 2015 and recently held a conference to mark the occasion. Yann Le Cam, EURORDIS’s Chief Executive Officer, spoke on the importance of increased and better engagement of patients in the medicines development and assessment journey. For more information see: Link Become a patient reviewer for the British Medical Journal. For more information see: Link PNH