39th E.S.PKU Conference 2025
Hosted at University Hospital Hamburg Eppendorf (UKE)
Please do not book hotel rooms individually. Conference access will most likely only be availabe to people booking the conference package. Day tickets will likely not be available this year!
Agenda Highlights:
Programme for all attendees (Common Programme):
- Experiences with PKU in Germany
- Experiences with Sepiapterin and Pegvaliase in Germany
- European PKU Guidelines 2.0
- Do we speak the same language? Pros and Cons of European and German Guidelines
- New dietetic and drug treatments – what should they bring to the patients?
- What can national patients’ organisations do to get drugs approved?
- What can we learn from the transition process in Leipzig
- Phe Free Consortium: How does it work and what’s in it for the patient?
- Patients’ voices recorded in a scientific approach
- Sheila Jones Award
Programme for Patients and their families (Patients’ Programme):
- Mental Health in PKU: From impact of diagnosis to uncertainties in health perspectives – What do we know?
- Shared Decision Making: The role of patients’ preferences in therapeutic decisions
- Should patients participate in clinical trials – and why?
Common and Patients’ programmes will be simultaneously translated (English <> German)
Programme for Researchers and Health Care Providers (Professionals’ Programme):
- The Phe Free Consortium Neurocognitive Work: What can we learn from it?
- MRI and neuropsychological data after four weeks increased Phe intake
- The French studies in adults – can Europe learn from it?
- After 30 years of gene therapy studies – what can professionals and patients expect?
- Do we need to treat everyone with a blood Phe above 360 µmol/l?
Conference Hotel
- Dorint Hotel Hamburg Eppendorf
(direct neighbor to conference venue) - Motel One Hamburg Altona
(approximately 3.5 km from the venue)
Bus transfer once a day provided
Registration Procedure
- Step 1: Please fill in the registration form on the E.S.PKU Website (espku.org) as soon as possible.
You will immediately receive an e-mail with an attached spreadsheet for further details. - Step 2: Please complete and return the spreadsheet within 7 days.
Upon registration you will receive a mail confirmation that and a spreadsheet to fill out information for each participant booked by you. Please fill out and return the spreadsheet within 7 days. Within a few days you will also receive a invoice for your registration. Bookings are only valid once we have confirmed the money has been received. - Step 3: Please pay the registration fee as indicated in the notification.
Once your payment has arrived, you will receive a confirmation of registration.
Registration deadline: Registrations will be accepted until the conference is sold out.
Please note: A limited number of day tickets may or may not be available later, depending on conference capacities being available. However, we do expect the conference to sold out rather sooner than later, so it is very possible hat there are no day tickets available this year.
Please contact us (form below) if you still have got questions or want to come as a family with younger children.