Purpose -This paper seeks to report the key findings of two studies which were undertaken by Rare Disease UK to: understand patients' and their families' experiences of living with a rare disease; identify issues preventing research and access to good quality information, care, treatment and support; identify examples of good practice; and develop recommendations to improve service provision for patients with rare diseases and encourage research.Design/methodology/approach -Across the two reports discussed, a range of methods were used including: a survey of patients/family members; five multi-stakeholder working groups; conference workshops; a consultation paper; interviews; and desk research.Findings -There are a number of detailed findings across the two reports. At a broad level, the findings identify that despite the diverse range of rare diseases each with different symptoms and prognoses, patients often face similar issues. The report also identifies a number of possible solutions to facilitate research, speed up diagnosis, improve co-ordination of care and ensure high-quality information is available to patients and professionals.Practical implications -The findings and recommendations in the two reports discussed are informing the development of a UK plan for rare diseases by all four of the UK's health departments. This plan will be the first strategic approach to improving service provision for all patients with rare diseases in the UK.Originality/value -Very little research has been conducted into the experiences of patients with rare diseases or on how to improve service provision for all rare diseases in the UK. As a result, the two reports offer a substantial body of new evidence.

The variability of toxic trace contaminants in influents and effluents at three full-scale municipal sewage treatment plants was measured by collecting grab samples of degritted raw wastewater and non-chlorinated secondary effluent at two hour intervals over eight consecutive days. The samples were analyzed for metals, conventional contaminants and a range of organic trace contaminants. The metals and volatile organic compounds were the dominant contaminants found in the influents. In the effluents, organic concentrations were close to detectable levels and polyaromatic hydrocarbons were almost never detected. Some influent metal and organic contaminants varied diurnally while others appeared to fluctuate randomly with periodic spike inputs. The variability of most effluent trace contaminant concentrations was considerably attenuated in comparison to influent concentrations.

Laboratory-scale activated sludge treatment systems were operated under dynamic loading conditions to investigate the non-steady state behaviour of volatile organic contaminants (VOCs) under controlled conditions. Four step tests were conducted in which an incremental increase in the concentrations of selected contaminants was applied to the reactor feed from background levels of about 15 µg/L to levels of about 100 µg/L for a duration of approximately three hydraulic retention times. Although it was not possible to define the relative contributions of stripping and biodegradation to the removal of the test VOCs, different mechanisms are responsible for the removal of short-term, non-steady state inputs of chlorinated and non-chlorinated VOCs. No apparent effect of SRT or HRT on VOC removal was observed at the conditions tested.

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Predenitrification nitrification (PDN) technology was applied in two stage anoxic-aerobic systems treating coke plant wastewaters and coal liquefaction process condensates. Both activated sludge and biological fluidized bed modes of operation were investigated for their potential to remove ammonia, phenol, thiocyanate, cyanide and a wide range of trace organic contaminants. It was demonstrated that during nitrification of these complex wastewaters, simultaneous removal of most of the conventional and trace organic contaminants was achieved. Specifically, of the base/neutral extractable organic compounds, only di-n-butyl phthalate was consistently found in treated effluent samples at greater than trace levels (0.01 mg/l). It appears that trace organic contaminant control in complex industrial wastewaters can be achieved by the application of PDN technology.