Situation of refugee rare metabolic disorder patients (Updated)

gregor.hammerschmidt Announcements

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 treatable metabolic disorders. All signatory states of the Convention of the United Nations on the rights of persons with disabilities are committed “to take all necessary measures …

European PKU Guidelines Published

gregor.hammerschmidt Announcements

With their benchmark report in 2012, the European patient organization E.S.PKU has identified significant inconsistencies in PKU treatment and access to care in Europe, and called for uniform guidelines. Coordinated by the Chairman of the Scientific Advisory Committee of the E.S.PKU, since then a group of renowned metabolic experts independently developed 70 statements based on available evidence and taking into account nearly 500 scientific publications. Prof. van Spronsen stated: “Remaining within national frameworks is now outdated practice.” At the beginning of 2017 the ten key statements of the European guidelines were already published in Lancet Diabetes, Endocrinology and Metabolism. With …

Introducing the “Global PKU Association”

gregor.hammerschmidt Announcements

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 announcement August 1, 2017

PKUDay 2017

gregor.hammerschmidt Announcements

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 http://www.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 to promote your event. Also if you have questions you can contact us at …

Social media discussion about MipSalus

gregor.hammerschmidt Announcements

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 http://www.mipsalus.dk. E.S.PKU has been active to gather information on recent social media topics for you. If you have found something PKU-related that you need clarified, feel free to contact us, we will take care of …

European Guidelines for Phenylketonuria Published

gregor.hammerschmidt Announcements, Publications

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 different in Europe although it’s always the same disease. After the publication of Closing Gaps in Care the delegates of the E.S.PKU published the Consensus Paper in Orphanet Journal of Rare Diseases. This voices the patients need …

PKU Day Website launched

gregor.hammerschmidt Announcements

We are happy to announce the launch of the new PKUDay.org website. PKU Day is coming up June 28th. For this year we have planned some special events and hope that everybody will take part in. Spreading the word about Phenylketonuria (PKU) is important. International PKU Day gives us the chance to promote PKU and make it known better. Please help by sharing the website and social media accounts of International PKU Day. The biggest event for this year will be the “Robert Guthrie Memorial Dinner”. Read all about it on the PKUDay Website.

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European Phenylketonuria – PKU Guidelines

gregor.hammerschmidt Announcements, Publications

The European Guidelines for Phenylketonuria is one of the latest projects funded by E.S.PKU. The project was started after the publication of the consensus paper, written by delegates of E.S.PKU, showing the needs and wishes for guidelines. Under the lead of Professor Francjan J. van Spronsen and E.S.PKU SAC (scientific advisory committee) those independent PKU guidelines have been developed, with the help of about 20 professionals, experts in PKU, over the past three years. At the annual E.S.PKU conference 2015 in Berlin, Germany- excerpts from these guidelines were presented to the professionals as well as parents/patients. One of the main aims of the Guidelines is that they …

E.S.PKU & PKUBoard present: PKU Travel Network

gregor.hammerschmidt Announcements

In the past E.S.PKU has been approached to set up a travel network for PKU patients. In order to achieve this goal we have partnered with PKUBoard1, an online messaging board. There are two reasons why E.S.PKU has decided to work together with PKUBoard on this matter: The E.S.PKU website is an information page and does not allow member registration Besides the conference E.S.PKU does not interact with patients directly, but offers an umbrella organization to it’s members (local organizations) The travel network has been introduced at the annual E.S.PKU Conference 2015 at the patients session. Here you can get the idea in …