SAVE THIS DATE: November 1st, 2020 – Digital E.S.PKU Conference

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SAVE THIS DATE: November 1st, 2020 Come together for the digital ESPKU Conference 2020! Due to the corona pandemic, this year it is impossible for ESPKU to run a face-to-face meeting with more than 500 people in Madrid, as initially planned. Nevertheless, the ESPKU Annual Conference will take place on Sunday, 1 November 2020: Digital, virtual, on the internet!  On this day, at 12:00 noon CET, the European PKU community will gather in front of their computers and smartphones. The virtual meeting will be accessible for patients and their relatives, patient’s representatives, healthcare providers and researchers from all over Europe …

The European Parliament Cross-Party Alliance on PKU

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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 …

COVID-19 statement by E.S.PKU

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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 …

E.S.PKU Conference 2020

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The ESPKU regret to announce that the Annual Conference scheduled for October 29th to November 1st, 2020 in Madrid has been deferred to 2021 due to the corona pandemic. We do not expect the impact of this pandemic to be resolved in time frame available. The ESPKU will consider possible virtual events and will provide further  information as appropriate. Consequently,  the 2021 Conference  will not take place in Georgia as initially planned. The Conferences in 2022 and 2023 (in France & the U.K) are not affected. This far-reaching decision was not easy for the ESPKU Board to take. However, after considering all options, this …

Spring Meeting & Conference 2020

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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

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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 …

E.S.PKU Conference 2019

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We are happy to host our conference in Izmir, Turkey for this year. Turkey hosts one of the biggest PKU communities and we have been keen to come back to Turkey for the last couple of years. Learn more about what to expect from our annual conference this year! There are still a couple of days left to book your ticket for the annual E.S.PKU conference. We also have already published the full conference program. This makes it easier for you to see what interesting topics will be presented this year besides meeting all those people from around the globe. …

European Guidelines Version 2

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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)

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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 …