COVID-19 statement by E.S.PKU

gregor.hammerschmidt Announcements

Needs of Patients with rare disorders of protein metabolism must not be neglected! Currently, the main focus of all health systems is the global fight against Covid-19. However, the treatment requirements of patients with rare disorders of protein metabolism must not be neglected. Phenylketonuria (PKU) and other rare disorders of protein metabolism require early diagnoses and immediate treatment. If left untreated, PKU causes severe mental and physical retardation. Effects on other diseases, such as Tyrosinemia or Maple Syrup Urea Disease (MSUD), can be potentially fatal. Neonatal screening must continue for every baby born. This is essential for timely diagnoses and …

Spring Meeting & Conference 2020

gregor.hammerschmidt Announcements

As you are aware there is a global outbreak of the coronavirus. As a responsible organization we are alway monitoring the situation and basing our decisions on this. As the situation is very unstable at the moment we need to inform our delegates that the spring meeting 2020 will not be held in Madrid. We will continue to have our spring meeting for our delegates as an online meeting. More information is available on the workplace for delegates. Please rest assured that we are also closely monitoring the situation for our annual conference this fall. As of right now we …

Treatment for adult metabolic patients is insufficient

gregor.hammerschmidt Announcements

An increasing adult PKU population requires urgent action to avert a severe treatment crisis In Europe, neonatal screening for Phenylketonuria (PKU) has been introduced over a period of 50 years between 1964 (Belgium) and 2015 (Finland). Until the early 1990s, PKU was known as a paediatric disease. Thanks to timely diagnosis and efficient treatment options, patients have a normal life expectancy. However, the treatment of adults is still neglected even in those countries with the longest screening history. Healthcare systems are not adequately prepared for increasing patient numbers. More and more adult patients lack access to age-appropriate treatment in metabolic …

European Guidelines Version 2

gregor.hammerschmidt Announcements

As with every publication it’s important to keep it up to date. This is why we are very proud that the work of the second edition of the European Guidelines is already underway. The kickoff for this project has taken place at the E.S.PKU Conference 2018 in Venice, Italy. As announced by Prof Francjan van Spronsen in the very beginning of the first European guidelines project – even when you are finished there is still a lot of work to be done. Now that those guidelines have been completed work is necessary to get them implemented in every country. This …

Addressing the high burden and significant unmet needs in Phenylketonuria (PKU)

gregor.hammerschmidt Announcements

Read this executive summary and download the full report. This Policy Roundtable, organised by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), was hosted by MEPs Deirdre Clune (Ireland, EPP) and Nessa Childers (Ireland, S&D). Objectives to have an informed discussion on phenylketonuria (PKU) and its impact; to support understanding of the true nature of the condition; to identify the unmet needs in the area of PKU; to gather expert opinions on what can still be done to advance the interests of people living with PKU; to generate political momentum. Potential areas of action, arising from …

ESPKU calls for new born screening for every new born worldwide!

gregor.hammerschmidt Announcements

At the occasion of International #PKUDay 2018, ESPKU calls to implement and maintain newborn screening for all newborns around the world! 1) Agata Bak, Spain2) Duncan Noble-Nesbitt, United Kingdom3) Sanja Peric, Croatia4) Kate Hall (ISNS), UK 5) Laura Momme, Denmark6) Malgorzata Henek, Poland7) Paul van Berkel, The Netherlands8) Tobias S. Hagedorn, Germany

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Announcing: Sheila Jones Award

gregor.hammerschmidt Announcements

E.S.PKU is very happy to announce the launch of the “Sheila Jones Award”. It’s the first time there is a patient advocate award in the field of PKU and it will be presented at this years annual E.S.PKU conference. If you are interested to learn more about the award and how to submit your entry follow this link: Sheila Jones Award Watch this video for a brief introduction to the award:

Application deadline for hosting the 2018 ESPKU Annual Conference expired (Updated)

gregor.hammerschmidt Announcements

Following the decision of the 2017 ESPKU General Meeting in Hell (Norway), the ESPKU legal members had the opportunity to apply for hosting the 2018 ESPKU Annual Conference until October 31st, 2017. Several applications and proposals have been submitted and will now be evaluated by the ESPKU Executive Board. The final decision will be announced before December 1st, 2017. After careful deliberation the ESPKU Board have awarded the 2018 Conference to Italy. Further details on location and date to follow