E.S.PKU (European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria)
E.S.PKU Urges Policy Makers to Close Significant Gaps in Care for Patients with Phenylketonuria (PKU) Across Europe at the European Parliament
Brussels (ots/PRNewswire)
- World Rare Disease Day 2012
Today, on World Rare Disease Day, the European Society for Phenylketonuria and Allied Disorders (E.S.PKU) urged policy makers to bridge significant gaps in Phenylketonuria (PKU[1]) 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"[2], launched on this occasion. The event was hosted by Members of the European Parliament (MEP) Esther de Lange and Antonyia Parvanova.
Esther de Lange, MEP, said: "Unfortunately, for many diseases, as for PKU, vast differences exist between European Union (EU) countries. Therefore the EU Council Recommendation on the implementation of rare disease plans is a welcome signal. I invite national governments to include PKU as an example in these plans, including strong guidance on high standards of screening, care and treatment."
"The level of health inequalities faced by patients suffering from PKU in Europe is unacceptable. Debating these with members of the Parliament in Brussels is a crucial step to draw attention to the condition which is one of the most common rare diseases in Europe[3]," said Eric Lange, President of E.S.PKU. "Through this initiative, we call on European policy makers and other decision-makers to help us give our PKU patients an equal chance of living a healthy and productive life, no matter where they live."
Maria Gizewska, Paediatrician, Poland, stressed: "The medical community is well aware of their responsibility and role in finding broader consensus on therapeutic threshold, treatment targets and advice. Despite recent advances in many aspects of PKU, there is however still a lack of baseline data on the condition globally, and more clinical evidence is needed to overcome this knowledge gap."
Eric Lange, E.S.PKU, concluded: "I call on those here in the room today to include PKU in activities undertaken at EU level such as the upcoming initiatives on Newborn Screening, and the Implementation Report on National Plans. Further, I would like to encourage healthcare professionals in particular to continue their endeavours in developing much-needed clinical guidance to ensure that all PKU patients receive the optimal care they deserve."
The debate is the first of a series of E.S.PKU initiatives to prioritize PKU as a rare disease on national health agendas, address unequal access to treatment and gaps in reimbursement. These initiatives are supported by an unrestricted grant from Merck Serono.
A full version of the release can be downloaded at http://www.espku.org. We further invite you to watch and download the full launch debate at http://www.blastmedia.eu/espku (webcast available on the 29th February from 4pm CET onwards).
1. 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. More information at http://www.espku.org
2. The benchmark report can be downloaded from the E.S.PKU website: http://www.espku.org/images/stories/Benchmark_report_2011/PK U_report_FINAL_v2_nomarks.pdf
3. Phenylketonuria (Seminar). Blau et al, Lancet (376):1417-27, 2010.
For further information please contact: Eric Lange President E.S.PKU langelizzard@hotmail.com +44(0)7816-979-629 Laetitia Defaye Weber Shandwick Geneva ldefaye@webershandwick.com +41(0)22-879-8514