LIVERPOOL, England, October 19, 2012 /PRNewswire/ --
New initiative to develop much needed European guidelines for the optimal treatment of PKU is announced
The European Society for Phenylketonuria and Allied Disorders (E.S.PKU) is welcoming more than 400 participants to its 26th Annual Meeting from 18-21 October 2012. The event is a unique forum for patients, carers and healthcare professionals to drive initiatives forward together with the objective of improving the management of Phenylketonuria (PKU) across Europe.
"2012 was a significant milestone for us with the launch of the first PKU benchmark report Closing the Gaps in Careat the European Parliament in Brussels on Rare Disease Day. The first step to addressing the gaps in care was to develop a consensus paper[*] calling for a European gold standard in screening, treatment and monitoring across Europe. This paper, calling upon health professionals to establish guidelines in the optimal care of PKU, is currently being prepared for submission to a peer-reviewed publication.
This progress could not have been achieved without the strong collaboration of all our members. This year, we will be building on that momentum through the launch of a new working group dedicated to developing guidelines for the optimal treatment of PKU," said Eric Lange, President of E.S.PKU, and Chair of the Meeting.
In addition, The E.S.PKU will be looking to provide a European reference network for health professionals.
"We need to ensure that PKU patients get an equal chance of living a healthy and productive life, no matter where they live. We cannot accept that some people with PKU are still being left untreated in Europe. The publication of the E.S.PKU consensus paper will contribute to addressing that," added Dr Francjan J van Spronsen, chair of the Scientific Advisory Committee of the E.S.PKU. "The consensus paper asks us as professionals in PKU care to develop European or even world-wide guidelines on the treatment of PKU for every age throughout life."
The Annnual Meeting includes a common programme for all attendees as well as tailored workshops for patients and their relatives, delegates of ESPKU member organisations or medical professionals.
Notes to the Editor:
About Phenylketonuria (PKU)
PKU affects around 1 in 10,000 children born in Europe. PKU is an inherited rare chronic condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine. Phenylalanine is commonly found in high protein foods such as dairy products, eggs, red meat, chicken, etc. If not detected and treated soon enough, phenylalanine can cause irreversible damages to the brain. Although treatments exist in Europe, inconsistencies persist in many countries with regard to access to adequate treatments and reimbursement policies.
The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) is the umbrella organisation of about 23 national and regional associations from 23 countries established by parents. Since 1987, representatives of most European countries have come together to improve the quality of life of persons afflicted. The main event of the E.S.PKU is a yearly European conference. This conference is unique, since both patients (and parents) as well as medical representatives join this meeting and have the opportunity for scientific and personal exchange.
*. The consensus paper was supported by an unrestricted grant from Merck Serono
- PKU is an inherited rare chronic condition which affects around one in every 10,000 children born in Europe. Its primary treatment is through a modified diet, which (if adhered to) is successful in preventing the devastating brain damage associated with untreated PKU. More information at http://www.espku.org
- The benchmark report can be downloaded from the E.S.PKU website: http://www.espku.org/images/stories/Benchmark_report_2011/PKU_report_FINAL_v2_nomarks.pdf
For further information please contact:
Weber Shandwick Geneva
SOURCE E.S.PKU (European Society for Phenylketonuria and Allied Disorders)