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  • News from ESPKU.org Quote from E.S.PKU.org: “ Guidelines Group 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 t…

  • News from ESPKU.org Quote from E.S.PKU.org: “ 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. Laura Petreuș – Winner 2018Seila Jones AwardThe post First winner of the Sheila Jones Award appeared first on E.S.PKU.” Source: espku.org/2018/11/05/first-winne…

  • News from ESPKU.org Quote from E.S.PKU.org: “ Read this executive summary and download the full report. 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 identif…

  • News from ESPKU.org Quote from E.S.PKU.org: “ Watch the video showing “The legacy of Professor Horst”. This film was originally done by DIG-PKU for the 100th anniversary of Horst Bickel.The post The legacy of Professor Horst Bickel“ appeared first on E.S.PKU.” Source: espku.org/2018/09/01/the-legac…essor-horst-bickel%C2%93/

  • News from ESPKU.org Quote from E.S.PKU.org: “ At the occasion of International #PKUDay 2018, ESPKU calls to implement and maintain newborn screening for all newborns around the world! youtu.be/VC8IttbzUW8 The post ESPKU calls for new born screening for every new born worldwide! appeared first on E.S.PKU.” Source: espku.org/2018/06/28/espku-calls-for-new-born-screening/

  • News from ESPKU.org Quote from E.S.PKU.org: “ Fresh from the Press: Pegvaliase (now called PalynzigTM) has been approved by the FDA for use in adult PKU patients in the USA with phenylalanine > 600 micromol/l. Francjan J van Spronsen, Maria Gizewska, Anita MacDonald, Kirsten Ahring Why is a different treatment needed? ‘You are not lucky when you have PKU’ I explained to a colleague. He replied “Why? What you’ve always told me is that when left untreated, patients with PKU have severe development…

  • News from ESPKU.org Quote from E.S.PKU.org: “ 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: The post Announcing: Sheila Jones Award appeared first on E.S.PKU.…

  • ESPKU.org - PKUDay 2018

    PKU Board - - E.S.PKU

    Post

    News from ESPKU.org Quote from E.S.PKU.org: “ International PKU Day is taking place on June 28th. This year once again marks a special year for this important day for Phenylketonuria. It’s time to celebrate 100th birthday of Horst Bickel. As one of the grounding farther for the PKU diet the E.S.PKU has published the report “The three landmarks of phenylketonuria” once again. You can find it on the official PKUDay website: pkuday.org/about/pku-day-2018/. Of course you are very keen to learn more …

  • News from ESPKU.org Quote from E.S.PKU.org: “ 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 I…

  • News from ESPKU.org Quote from E.S.PKU.org: “ 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. The post Application deadline for hosting the 2018 ESPKU Annual Conference expir…

  • News from ESPKU.org Quote from E.S.PKU.org: “ According to UNHCR data, currently there are more than 65.000.000 people fleeing from war, conflicts and persecution, as much as never before in history. About 20.000.000 people left their native countries and seek shelter abroad, most of them in Europe. It is a matter of fact that there are a significant number of people amongst these refugees, who suffer from any diagnosed or even undiagnosed rare disease, such as Phenylketonuria (PKU) or other tre…

  • News from ESPKU.org Quote from E.S.PKU.org: “ Dear PKU Community, Today is a very special day for the PKU community, especially for the European. We are happy to announce that after the publication of the “10 Key Statements” in January today the full version of the European PKU Guidelines have been published on Orphanet Journal of Rare Diseases. As with the previous documents we are happy that it is open access so you can go read them yourself. Now it’s our time to make those guidelines known. I…

  • News from ESPKU.org Quote from E.S.PKU.org: “ The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) is proud to announce to be part of the foundation of the “Global PKU Association”. You will find further information, like the mission statement in the attachment. As the foundation of this new organization is still in the early phases information will be published over time. For now enjoy reading the official statement below. Global PKU announcment Aug…

  • ESPKU.org - Explaining PKU

    PKU Board - - E.S.PKU

    Post

    News from ESPKU.org Quote from E.S.PKU.org: “ Everybody connected to Phenylketonuria (PKU) has been in the situation of explaining what it’s all about. The fresh association (Les Feux Folleits) has made a great effort to publish a video explaining PKU to children. Enjoy watching, sharing and using this video to explain Phenylketonuria to children. The post Explaining PKU appeared first on E.S.PKU.” Source: espku.org/2017/05/08/explaining-pku/

  • News from PKULive.tv Quote from PKULive.tv: “ Meet Norah and her family from Buffalo, NY, where the most recent Lifting the Limits for PKU fundraising event was held in April 2017.” Source: pkulife.tv/2017/05/04/lifting-the-limits-for-pku-buffalo/

  • ESPKU.org - PKUDay 2017

    PKU Board - - E.S.PKU

    Post

    News from ESPKU.org Quote from E.S.PKU.org: “ International PKU Day 2017 is coming up June 28th. If you have planned any activity on or around PKU Day, please let us know on pkuday.org so we can share the event on the official PKU Day website. You can provide us with an description, image, link and location for your event. It would be great to receive information on your plans soon so we can raise interest in sharing them early! You can download the PKU Day Logo on the PKUDay Website and use it …

  • News from ESPKU.org Quote from E.S.PKU.org: “ Recently, a publication on genefo.com about a new treatment in development for Phenylketonuria by Danish biotech company MipSalus, raised considerable discussion on social media. It was suggested that this treatment has already been approved in Europe and awaiting approval in the US. The ESPKU have contacted the CEO of MipSalus for clarification. The statement was published without approval and not accurate. For further information please visit mipsa…

  • News from ESPKU.org Quote from E.S.PKU.org: “ 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 th…

  • News from ESPKU.org Quote from E.S.PKU.org: “ The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) is very happy to announce that the European Guidelines for Phenylketonuria have been published in The Lancet Diabetes & Endocrinology. Getting to this point has taken many years of preparation. First in the line was the publication of Closing Gaps in Care. This showed the great need for European Guidelines. Treatment for Phenylketonuria is very differen…

  • News from PKULive.tv Quote from PKULive.tv: “ Here is the video I produced for the Lifting the Limits for PKU – Boston event held in May 2016. The event raised over $390,000 which will be directed towards research for new treatments, and an eventual cure, for PKU.” Source: pkulife.tv/2016/10/20/lifting-the-limits-for-pku-boston/