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

ots Originaltext: E.S.PKU (European Society for Phenylketonuria and Allied Disorders)
Im Internet recherchierbar: http://www.presseportal.de