Willkommen auf der Website der E.S. PKU

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.

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 Diese E-Mail-Adresse ist gegen Spambots geschützt! JavaScript muss aktiviert werden, damit sie angezeigt werden kann.

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