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E.S.PKU Conference 2010: REGISTRATION IS OPEN!!!
Saturday, 03 July 2010 09:10
The registration for the E.S.PKU conference is open! This years' conference will take place in Copenhagen (Denmark).
From Thursday 21st October untill Sunday 24th October Copenhagen will be overloaded with PKU-patients, parents of PKU-children, professionals dealing with PKU, delegates from our member associations and other interested people!
Don't miss this event. It will give you a chance to get the latest information and updates, but also to network with other patients (parents of patients) from all over Europe.
Interested? See the programme.
Prices:
325 euro per person. Price for children: 290 euro per child.
For this price you get all inclusive:
Conference entrance
Hotel from Thursday evening to Sunday morning.
Dinner, breakfast and lunch from Friday morning to Sunday morning (Breakfast).
Do you want to register now? Go to the special booking page for the E.S.PKU conference 2010
Not conviced yet? No problem, just check out the film of last year's conference.
BE AWARE: REGISTRATION DEADLINE IS SEPTEMBER 1st 2010
When registration is after September 1st a fine will be added to the conference fee.
Call for ambassadors
Tuesday, 15 June 2010 21:36
Is it time for you to start sharing your experiences of managing PKU through diet plus therapeutic treatment? Last year saw the arrival of the first approved treatment to lower blood phe-levels in BH4 responsive patients.
If you have a story to tell about this new therapeutic addition to your diet, the E.S.PKU would like to hear from you. These first experiences could offer inspiration to other people living with PKU.
Please contact us by responding to this message on
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We will contact you to hear your story and to talk to you about the PKU ambassador programme.
Outcome European survey 'treatment of PKU'
Wednesday, 24 March 2010 20:51
The E.S.PKU presented the results of the European-wide survey of both patients and physicians dealing with PKU, followed by a live interview with Dr. Maria Gizewska, Vice-Chair of the Scientific Advisory Committee of E.S.PKU.
The survey was carried out in 2009 to understand the attitudes and behaviours of patients, families and healthcare professionals treating PKU. The largest and only research of its kind to date, the survey aimed to identify gaps ins service provision and opportunities to improve services for people living with PKU across Europe.
While the research showed some similarities in the way patients, parents and healthcare professionals approached PKU, some differences also appeared. The three main challenges of living with PKU, thought the physicians, were the temptations of eating normal food, the taste of supplements and low-phe foods, and the number of foods not allowed on the PKU diet. Yet for patients, travelling from home and the need to plan everything in advance were seen as the biggest challenges, after the temptation of normal food.
Patient results also show us that 75 % of patients stray from their diet as opposed to the presumption by HCPs that 55 % strayed from their diet.
The research, carried out in the second half of 2009, included healthcare professionals from across Europe, as well as patients and their families.
Film impression of conference ESPKU
Sunday, 14 March 2010 14:27
Click here to view the film on youtube.
Kuvan in Europe.
Wednesday, 30 September 2009 15:15
Merck Serono, a pharmaceutical company, launched in April 2009 their product Kuvan in Europe. Kuvan is the first medication to lower blood phe-levels in patients with BH4-responsive PKU. Kuvan will help those patients that respond to the product and lessen the burden of their diet. The ESPKU hopes that it might help those patients that want to go (or are already) ‘off diet’ to go back to the diet again.For those who are already off diet we hope that the message of Kuvan being on the market will be heard.
Merck Serono has confirmed that Kuvan is currently reimbursed in the following countries:
- UK
- Germany
- France
- Italy
- Spain
- Greece
- Netherlands
- Austria
- Norway
- Slovakia
- Denmark (hospital budget)