The European Parliament Cross-Party Alliance on PKU

gregor.hammerschmidt General

ESPKU is in charge of coordinating the European Parliament Cross-Party Alliance on PKU , which was launched in March 2020 . What is the European Parliament Cross-Part Alliance in PKU? Cross-Party Alliances, more commonly known as Interest Groups, bring together MEPs interested in a specific issue that they would like to actively champion. In other words, these Alliances function as internal advocacy/pressure groups within the European Parliament. A wide variety of such groups is in existence, some more active than others; their influence can be sizeable as they can make use of various tools to put pressure – on the …

Q & A

Questions & Answers for the European Guidelines?

gregor.hammerschmidt General

As you have learned in our last news there has been a first publication on the European Guidelines. As you have been reading this first publication we believe that there are some questions that might have come up. This is why we have put together the first Questions & Answers for the European Guidelines. We want to give you the opportunity to submit questions to us. The most popular questions will be answered by the experts responsible for writing the guidelines. Please submit your questions until March 3rd. We will be working on answering your questions later in March. So keep an eye on …

#GuthrieMemorialDinner – June 28th – PKUDay

gregor.hammerschmidt General

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 …

Rare Disease Day Logo

E.S.PKU on Rare Disease Day 2016

gregor.hammerschmidt General

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)

gregor.hammerschmidt General

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) …

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

gregor.hammerschmidt General

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 …

Review of EU legislation on dietary food

gregor.hammerschmidt General

Review of EU legislation on dietary food could mean a significant backward step for the treatment and management of Phenylketonuria (PKU) On March 28th, 2105 the Spring Meeting of the European Society for Phenylketonuria and Allied Disorders took place in Berlin, Germany. 24 delegates from 13 national PKU Associations took part and discussed the latest political developments. PKU patients have to follow a strict low protein diet supplemented by an amino acid replacement. They have to calculate the intake of Phenylalanine to avoid any health problems related to the disease. Therefore quantitative labelling of Phenylalanine is crucial for their daily …