Below you'll find a list of all posts that have been categorized as “Announcements”
JCA should not hamper access to transformative ATMPs
“The fact that the benefits from PKU treatment in childhood are ‘clear and immediate’ does not equate that there are no benefits for PKU treatment in adulthood” On June 28th PKU community celebrates International PKU Day. This year, E.S.PKU decided to raise awareness of adults with PKU by running a successful campaign “The Life of adults with PKU”. Throughout June on E.S.PKU social media various statements were published about the challenges of adults with Phenylketonuria. Since Phenylketonuria (PKU) is diagnosed in the early stages of life (nowadays in newborn screening), it has traditionally been perceived as a childhood disease. The …
Dear ESPKU Member Organisations I hope you are all well, and , on behalf of the ESPKU Board , thank you all, for your tremendous support for Ukrainian PKU patients. The ESPKU has embarked on a project to assess the differences between care recommended in the European Guidelines on the treatment for PKU- and the reality in care delivered in European Countries. We wish to identify gaps between the two if they exist. The findings will be analysed, peer reviewed and published in a reputable scientific publication. We have developed a questionnaire for all PKU patients/carers to complete. The more responses …
We are happy to share with you the full video of the first ever virtual E.S.PKU conference. 2020 was a special year forcing us to not host our physical meeting in Spain but rather to have an online event instead. While this is not closely what a physical meeting can offer we think that we had a very interesting and smooth first online conference. In case you have missed it when it streamed live – you have now the unique chance to revisit the complete conference on our YouTube channel. Please also don’t forget to subsribe to our YouTube channel …
Covid-19 is a serious infectious disease which can cause severe complications, including death. It is important that we do everything we can to prevent the spread of Covid-19 and a global vaccination programme is a crucial part of this. It is imperative that everyone with PKU who can participate in the Covid-19 vaccination programme should do so. REMEMBER, COVID-19 IS NOT LIKE FLU. IT IS MORE CONTAGIOUS, MORE DEADLY, AND IS SPREADING ACROSS A WORLD WHERE NO-ONE IS IMMUNE. If you do develop Covid-19, as with other infections, it is likely to cause high blood phenylalanine levels due to the …
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 …
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 …
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 …
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 …
Laura Petreuș is the first winner of the Sheila Jones Award. An patient advocate award launched by the E.S.PKU in 2017. You can learn more about the award on our dedicated page: Sheila Jones Award. Be sure to check back at a later time to view the award ceremony that took place at #ESPKU2018.
