#GuthrieMemorialDinner – June 28th – PKUDay

International PKU Day is happening on June 28th. Spreading the word about Phenylketonuria is very important to achieve our goals. As we have announced in our last news post we have launched a dedicated website for the International PKU Day. It’s available at www.pkuday.org. For this year there is a special event planned as it’s the 100th anniversary of Robert Guthrie birth. The #GuthrieMemorialDinner is a special occasion and an easy way to show your support for Phenylketonuria. Learn more about the idea: To identify PKU babies affected by Phenylketonuria immediately after birth, Robert Guthrie invented the possibility for newborn screening, also known …

PKU Day Website launched

We are happy to announce the launch of the new PKUDay.org website. PKU Day is coming up June 28th. For this year we have planned some special events and hope that everybody will take part in. Spreading the word about Phenylketonuria (PKU) is important. International PKU Day gives us the chance to promote PKU and make it known better. Please help by sharing the website and social media accounts of International PKU Day. The biggest event for this year will be the “Robert Guthrie Memorial Dinner”. Read all about it on the PKUDay Website.

Call for Papers

Dear professionals, We would like to announce that we created a form where you can upload your abstract for the E.S.PKU conference 2016 in Dublin, Ireland. You can view the submission form here: – Submission Closed -. Submissions will be forwarded to the Scientific Advisory Committee of E.S.PKU. You can find more information about this years conference on the dedicated conference page. Please take note of the deadline: August 20th – last day of call for papers! Also don’t forget to subscribe to the conference newsletter so you don’t miss out on important updates.   If you have questions, you can use …

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E.S.PKU on Rare Disease Day 2016

Today, February 29th, it’s Rare Disease Day 2016! #PKU #RareDiseaseDay Metabolic Disorders, such as Phenylketonuria, is a rare disease. Help raise awareness for PKU so that people understand our situation better. You may want to check the official website for the rare disease day in order to find out what’s happening in your town! We want to share this video by Kevin Alexander to you, showing an inspiring PKU story. Also don’t forget to prepare yourself for June 28th – International PKU Day. Raising more awareness for Phenylketonuria is essential to achieve a better quality of life. To see why that is …

Latest developments on the review of the EU legislation on dietary food (FSMP)

New rules for Food for Special Medical Purposes (FSMP) have passed the EU Parliament A delegated regulation on FSMP will complement the provisions on the Food for Specific Consumer Groups Regulation (EU 609/2013) to ensure appropriate requirements for the composition, labelling and communication of FSMPs and thereby shall guarantee availability and perceptibility of low protein food for dietary management of Phenylketonuria and allied disorders In early 2015 we reported on the current review of EU legislation on dietary food: the former Directive 2009/39/EC (framework directive) has been repealed by a new Regulation (EU) 609/2013 on Food for Specific Consumer Groups (FSG) …

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Rare Disease Day 2016 – Get Active

Rare Disease Day 2016 is held on the last day of February. This means it’s on the 29th of February 2016. As Phenylketonuria is one of those rare diseases it’s important to honor this day and remember others about the existence of rare diseases. It’s important you get active yourself. Visit the official Rare Disease Day Website, or your local Rare Disease organization, for more information. We also want to share with you the official Video for the Rare Disease Day 2016. If you have a moment more to spare we also want to point you to the PKU Day. PKU …

E.S.PKU 2015 Conference Experiences

We are looking back at a very successful E.S.PKU conference 2015. As you might have seen there are quite a lot of official videos available for our conference 2015 in Berlin, Germany. If you haven’t seen them yet – or want to watch them again – they are all linked on our conference page. There you can also experience a lot more about the conference. But of course there aren’t just our conference experiences, but those of participants. We are happy that this year we had some attendees who brought along their own cameras, blogs, etc. to capture their experience with the …

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European Phenylketonuria – PKU Guidelines

The European Guidelines for Phenylketonuria is one of the latest projects funded by E.S.PKU. The project was started after the publication of the consensus paper, written by delegates of E.S.PKU, showing the needs and wishes for guidelines. Under the lead of Professor Francjan J. van Spronsen and E.S.PKU SAC (scientific advisory committee) those independent PKU guidelines have been developed, with the help of about 20 professionals, experts in PKU, over the past three years. At the annual E.S.PKU conference 2015 in Berlin, Germany- excerpts from these guidelines were presented to the professionals as well as parents/patients. One of the main aims of the Guidelines is that they …

Passing of Ass. Prof. Flemming Güttler, M.D., Ph.D.

We are mourning the passing of the former chairman of the ESPKU Scientific Advisory Committee Ass. Prof. Flemming Güttler, M.D., Ph.D. On December 30th 2015, Flemming Güttler passed away at the age of 81. Officers and members of ESPKU remember him being an active Chairman of the ESPKU Scientific Advisory Committee from 1988 until 2000. With his professional experience and his great personal commitment he helped ESPKU connect to professionals and patients from all over Europe and to make our Society well known and accepted in the scientific world. It was his passion to prevent the devastating outcomes of untreated …

E.S.PKU & PKUBoard present: PKU Travel Network

In the past E.S.PKU has been approached to set up a travel network for PKU patients. In order to achieve this goal we have partnered with PKUBoard1, an online messaging board. There are two reasons why E.S.PKU has decided to work together with PKUBoard on this matter: The E.S.PKU website is an information page and does not allow member registration Besides the conference E.S.PKU does not interact with patients directly, but offers an umbrella organization to it’s members (local organizations) The travel network has been introduced at the annual E.S.PKU Conference 2015 at the patients session. Here you can get the idea in …