The Northern Ireland released Implementation Plan for Rare Diseases
After much debate, the Northern Ireland Executive Health Minister, launched “Providing High Quality Care for people affected by Rare Diseases – The Northern Ireland Implementation Plan for Rare Diseases”. The Plan reaffirms Northern Ireland’s commitment to effectively implement the 51 Commitments of UK Strategy for Rare Diseases which will be taken forward during the period 2015-2021. These Commitments are set out under five key themes in the UK Strategy and an additional sixth theme which reflect the opportunity to work with their neighbours in the Republic of Ireland to realise the mutual benefits of cross-border collaboration on rare diseases. It aims to ensure that people living with a rare disease have access to "the best evidence-based care and treatment that health and care services, together with charities, research and industry can provide."
The themes committed to by the Department of Health, Social Services and Public Safety in Northern Ireland (DHSSPS) include:
• Empowering those affected by rare diseases and continuing to work with their patient partners, including those in Northern Ireland the Northern Ireland Rare Disease Partnership (NIRDP) and other patient groups.
• Identifying and preventing rare diseases which includes continuing to work with the UK National Screening Committee to ensure appropriate early diagnosis and establish carrier testing approved by the appropriate commissioning bodies, where the associated molecular tests are evaluated and recommended by UK Genetic Testing Network (UKGTN).
• Providing an accurate and timely diagnosis and early intervention by identifying genetic services as a priority for progress to enable all individuals with genetic conditions to access the tests they need to get a diagnosis.
• Coordination of Care by taking steps to facilitate the creation of a Northern Ireland register of rare diseases.
• Emphasising the role of research which includes the announcement of a £3.3 million investment in the establishment of a Genomics Medicine Centre in Northern Ireland, working with Genomics England, and participating in the 100,000 Genomes Project.
• Collaborating and working with the Republic of Ireland to identify areas in which rare disease patients would benefit from cross border collaboration.
Read the Plan
The Cancer Drugs Fund (CDF) was set up by the United Kingdom Government in 2010 to improve access to cancer drugs that were not routinely available on the the UK Department of Health and National Health Service (NHS) England. 74,380 patients were approved to receive cancer drugs through the CDF between October 2010 and March 2015, at a total cost of £968 million. However, the NHS England have failed to collect data for the outcomes of patients with cancer who received treatment through CDF, according to a report published by the National Audit Office (NAO), which scrutinises public spending for the UK Government. 
A study published in the Health Research Policy and Systems reports that in the United Kingdom there are discrepancies between cancer research funding allocation and societal burden. The authors estimated the burden using the metric ’years of life lost’ (YLL), which combines overall mortality and age at death using United Kingdom data from 2010, and compared research funding from the National Cancer Research Institute for 26 types of cancers. 
Two short articles showcasing the current scenario of rare diseases in China has been published in the Orphanet Journal of Rare Diseases. The first article titled - 
A study published in Genetics and Molecular Biology identifies and describes the operating costs associated with the molecular diagnosis of genetic diseases, in Brazil. To approximate the costs associated with these tests, data was collected from hospital software and a survey of market prices. The authors identified 2 main factors as the main determinants of the cost values obtained in this study: the use of the available capacity and the techniques used for genetic testing. 
This November, Orphanet officially became the 30th Platform of the French Institute of Bioinformatics (IFB). The IFB is a national bioinformatics infrastructure bringing together platforms from the main players in research in France: CNRS, INRA, INRIA, CEA and the INSERM, as well as the Curie and Paster Institutes and French universities. At the moment, 30 platforms are members, grouped into six regional centres across France. The IFB's primary mission is to provide the basic services and resources in the field of bioinformatics for scientists and engineers working in life sciences. Notably, IFB is the French node of the European research infrastructure 
