Date: The ESPKU Annual Conference 2013 will take place from Thursday, October 31st (date of arrival) until Sunday, November 3rd (date of departure). The official programme will start on Friday, early morning, and end with the conference dinner on Saturday evening.
Venue: The conference will be held in Antwerp, Belgium
Programme: Separate programmes and workshops will be organised for ESPKU member delegates, professionals and patients / relatives on Friday. On Saturday a common programme for all attendees will be offered. There will be an industrial exhibition as well as creche and an interesting social programme. Details on the programme will be published as soon as available.
Registration fee: Information on the registration fee and procedures will be published as soon as available.
Sponsors: We are looking forward to present the conference sponsors as soon as contracts have been negotiated and signed.
News on the 4th International PKU Adults Meeting 2013
Date: This years International PKU Adults Meeting will take place from Saturday 26th October 2013 to Thursday 31st October 2013 in Sint –Truiden, Limberg, Belgium. The location is a former Carmelite Monastery that has been completely renovated. Further details will be published as soon as possible on the ESPKU website.
Venue: Sint Truiden , Limburg , Belgium.
Programme: A programme of events will be organised and details will be published as soon as available.
Registration fee: Information on the registration fee and procedures will be published as soon as available.
Check out youtube for a film impression of the ESPKU meeting 2012
New initiative to develop much needed European guidelines for the optimal treatment of PKU is announced
More than 400 participants attended the 26th ESPKU Annual Conference from 18-21 October 2012.
This annual 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 Care at 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.
"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."
You will get more information on the ESPKU consensus paper project as well as impressions from another outstanding ESPKU Annual Conference in the following film:
Launch ESPKU Benchmark report at European Parliament
On February 29th 2012 (Rare Disease Day), the European Society for Phenylketonuria and Allied Disorders (E.S.PKU) urged policy makers to bridge significant gaps in Phenylketonuria (PKUi) care across Europe during a lunch debate at the European Parliament. The E.S.PKU presented a set of recommendations based on the first PKU benchmark report “Closing the Gaps in Care”ii, launched on this occasion. The event was hosted by Members of the European Parliament (MEP) Esther de Lange and Antonyia Parvanova. See the video's of the conference:
The ESPKU has developed a benchmark report on the management of phenylketonuria within EU healthcare economies 'PKU: closing the gap'. The report gives a country snapshot of 5 EU countries in the management of this rare disease. With the report the ESPKU envisages to initiate discussions and actions to enable a fairer deal for all PKU pateints no matter where they live.
The survey sought insight to the following issues:
Social impact of PKU
Applied treatment and care
PKU health policy agenda
The findings are based on 60-90 minutes interviews with physicians, patients, carers and representatives from healthcare authorities. All countries can make use of the interviews in order to benchmark their own country.
All countries can order maximum 5 paper copies. These copies can be ordered only by the official ESPKU contact person of our member associations. This has to be done by sending an email to:
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