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Launch of E.S.PKU Benchmark Report ‘Closing the Gaps in Care’ - Management of Phenylketonuria (PKU) within EU Healthcare Economies
Thursday, 02 February 2012 19:54
Wednesday 29 February 2012, European Parliament Brussels
12.00 – 14.30 hrs
To mark World Rare Diseases Day on Wednesday 29 February, the European Society for PKU (E.S.PKU) alongside MEPs Esther de Lange and Antonyia Parvanova have the pleasure to invite you to the Launch of E.S.PKU’s Benchmark Report – ‘Closing the Gaps in Care’, in the European Parliament.
This event aims to bring together high-level representatives from the EU institutions and National Stakeholders, as well as leading clinicians and academics. See the agenda for this meeting.
ESPKU will present their Benchmark Report – ‘Closing the Gaps in Care’, which compares access to and quality of care in five European countries, namely the UK, Spain, Sweden, the Netherlands and Poland. The Benchmark Report provides interesting insights into the management of PKU from healthcare professionals, purchasers and policy-makers to patients and carers’ perspectives.
We urge you to join with us to highlight that action needs to be taken at EU and national level, to address the issue of disparities in access to care as well screening practices of PKU across Europe.
Please register your attendance by Friday 17 February for this event by sending an email to This e-mail address is being protected from spambots. You need JavaScript enabled to view it
About PKU
PKU is affecting 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. These gaps in care at national and European levels must be closed by a top-down approach at EU level.
This event is sponsored through an unrestricted grant from Merck Serono
ESPKU conference 2012 - block the date
Saturday, 21 January 2012 21:36
Get the latest information from the best PKU professionals in Europe! Take this chance to get to know people from other countries in Europe who suffer from PKU. Don't miss the ESPKU 2012 conference this year.
The coference will be held in the UK (Liverpool) from October 18th (arrival) until October 21st (departure date). More information on the conference soon via our website.
ESPKU benchmark report
Saturday, 15 October 2011 21:25
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.
Download:
Interview with physicians
Interview with patients / carers
Interview with policy makers
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: This e-mail address is being protected from spambots. You need JavaScript enabled to view it .