EU CPA on PKU and ESPKU join to launch a new campaign

gregor.hammerschmidt Cross Party Alliance

International PKU Day: European Parliament Cross-Party Alliance on PKU and ESPKU jointly launch campaign to ensure all rare disease patients continue to benefit from future innovation Today, International PKU Day, marks the launch of an advocacy campaign to ensure that the foreseen revision of the EU Orphan Medicinal Products (OMP) Regulation will continue to benefit all people living with rare diseases, including Phenylketonuria (PKU). This campaign is led by the European Parliament Cross-Party Alliance on PKU and the European Society for Phenylketonuria (ESPKU)[1]. Prior to the existence of the OMP Regulation, only 8 medicinal products were available for patients living …

E.S.PKU Patient Survey

gregor.hammerschmidt Announcements

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 …

Q & A

Questions & Answers for the European Guidelines?

gregor.hammerschmidt General

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 the guidelines. Please submit your questions until March 3rd. We will be working on answering your questions later in March. So keep an eye on …

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 …

Latest developments on the review of the EU legislation on dietary food (FSMP)

gregor.hammerschmidt General

New rules for Food for Special Medical Purposes (FSMP) have passed the EU Parliament A delegated regulation on FSMP will complement the provisions on the Food for Specific Consumer Groups Regulation (EU 609/2013) to ensure appropriate requirements for the composition, labelling and communication of FSMPs and thereby shall guarantee availability and perceptibility of low protein food for dietary management of Phenylketonuria and allied disorders In early 2015 we reported on the current review of EU legislation on dietary food: the former Directive 2009/39/EC (framework directive) has been repealed by a new Regulation (EU) 609/2013 on Food for Specific Consumer Groups (FSG) …

Review of EU legislation on dietary food

gregor.hammerschmidt General

Review of EU legislation on dietary food could mean a significant backward step for the treatment and management of Phenylketonuria (PKU) On March 28th, 2105 the Spring Meeting of the European Society for Phenylketonuria and Allied Disorders took place in Berlin, Germany. 24 delegates from 13 national PKU Associations took part and discussed the latest political developments. PKU patients have to follow a strict low protein diet supplemented by an amino acid replacement. They have to calculate the intake of Phenylalanine to avoid any health problems related to the disease. Therefore quantitative labelling of Phenylalanine is crucial for their daily …