30th E.S.PKU Conference

It is with great pleasure that I welcome you all to the 30th Annual ESPKU
Conference here in Dublin, Ireland. This is the first time we have been here and
we really appreciate their enthusiasm in going all out to hold the Conference. They
have worked tremendously hard in such a short space of time to get things ready.
For the Irish people involved with PKU, this is a great opportunity for you to come
together and use the Conference as a springboard to build PKU Ireland; learn about
other PKU Associations and what they do; engage with Professionals at an informal
level; make friends and help give PKU Ireland a stronger voice. Carpe Diem!
This year we continue the theme of bringing stories behind the famous people.
Let us remember the first person to be treated with a low protein diet was of Irish
descent – Sheila Jones. To this end we welcome Anne Green – former director of
the metabolic unit in Birmingham who will present the Sheila Jones story in the
patients programme.
There has been a lot of discussion about the Guidelines. They are now ready and a
preliminary paper has been written for the Lancet. Until this is published we cannot
release them publically. This will be explained to you by Professor Francjan van
Spronsen during the Common Programme.
Those who were engaged in the process in producing the Guidelines can now take
a well earned (short) break before the first review. Studies on PKU come out all the
time and undoubtedly there will be some that will add efficacy and credence to what
has already been written. This will increase accuracy and increase the scoring of
some of the statements as time progresses.
As at all Conferences we shall be welcoming friends from all over the globe. Please
make them feel welcome and share your stories.
We acknowledge the great and continued support from our sponsors and, this year
from Failte Ireland (the Irish Tourist Board) and help from the Hotel in putting the
Conference together.
While this foreword is not equal to the wonderful style of that great son of Ireland –
Oscar Wilde – I’ll finish with one of his famous quotes
“I have the simplest tastes. I am always satisfied with the best”
And this is what we should all be striving for in the identification, treatment and
follow up care of PKU.
I wish you all a successful Conference.
Eric Lange
President, European Society for Phenylketonuria & Allied Disorders
Programme

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