E.S.PKU
@espku.org
E.S.PKU - European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria in the umbrella organization of about 41 national and regional associations from 31 countries established by parents and/or patients.
In her interview for our #pkulifestories campaign Maria Kozon shares how PKU perception changes from childhood to adulthood and why self-responsibility matters. #adultpkuawareness
🎥 Watch here: youtu.be/PkLqKxCrJcs
🎥 Watch here: youtu.be/PkLqKxCrJcs
December 9, 2025 at 6:23 PM
In her interview for our #pkulifestories campaign Maria Kozon shares how PKU perception changes from childhood to adulthood and why self-responsibility matters. #adultpkuawareness
🎥 Watch here: youtu.be/PkLqKxCrJcs
🎥 Watch here: youtu.be/PkLqKxCrJcs
Majority of people being active in patients' organisations and working to support people with PKU do it in their spare time. Today on Volunteers Day we want to emphasize how important their work is, thank them for it and wish them much success in this work.
December 5, 2025 at 5:58 PM
Majority of people being active in patients' organisations and working to support people with PKU do it in their spare time. Today on Volunteers Day we want to emphasize how important their work is, thank them for it and wish them much success in this work.
📢 To all adults with PKU - post about your life with PKU and add #adultpkuawareness I'll help us find them and may be helpful to other adults with PKU.
December 5, 2025 at 5:55 PM
📢 To all adults with PKU - post about your life with PKU and add #adultpkuawareness I'll help us find them and may be helpful to other adults with PKU.
Today we send our warmest wishes to Poland 🇵🇱 as Polish PKU Comm celebrates Polish PKU Day! 🎉 It's on the Name Day of Professor Barbara Cabalska who organised newborn screening 👩🦲 in Poland.
December 4, 2025 at 10:25 PM
Today we send our warmest wishes to Poland 🇵🇱 as Polish PKU Comm celebrates Polish PKU Day! 🎉 It's on the Name Day of Professor Barbara Cabalska who organised newborn screening 👩🦲 in Poland.
Meet Maria Kozon. She's another person interviewed for our #pkulifestories campaign. 🎬 It premiers tomorrow at 9 am CET
December 3, 2025 at 3:59 PM
Meet Maria Kozon. She's another person interviewed for our #pkulifestories campaign. 🎬 It premiers tomorrow at 9 am CET
Today we congratulate our German member organisation as they celebrate their 50th anniversary! 🎉 We extend our warmest wishes for continued success, growth, and inspiring achievements in the years to come.
December 1, 2025 at 5:21 PM
Today we congratulate our German member organisation as they celebrate their 50th anniversary! 🎉 We extend our warmest wishes for continued success, growth, and inspiring achievements in the years to come.
📢 Save the Date!
We are excited to announce that the 40th E.S.PKU Conference #ESPKUConference2026 will take place in Copenhagen, Denmark 🇩🇰 from 22–25 October 2026! It will be organised by our member organisation from Denmark. We can’t wait to see you in Copenhagen!
We are excited to announce that the 40th E.S.PKU Conference #ESPKUConference2026 will take place in Copenhagen, Denmark 🇩🇰 from 22–25 October 2026! It will be organised by our member organisation from Denmark. We can’t wait to see you in Copenhagen!
December 1, 2025 at 5:20 PM
📢 Save the Date!
We are excited to announce that the 40th E.S.PKU Conference #ESPKUConference2026 will take place in Copenhagen, Denmark 🇩🇰 from 22–25 October 2026! It will be organised by our member organisation from Denmark. We can’t wait to see you in Copenhagen!
We are excited to announce that the 40th E.S.PKU Conference #ESPKUConference2026 will take place in Copenhagen, Denmark 🇩🇰 from 22–25 October 2026! It will be organised by our member organisation from Denmark. We can’t wait to see you in Copenhagen!
The Patients & Families Programme at #ESPKUConference2025 provided a truly valuable agenda for all attendees with interesting presentations and discussions. Patients shared that they really enjoyed the programme and gained important insights that will support them.
November 27, 2025 at 6:25 PM
The Patients & Families Programme at #ESPKUConference2025 provided a truly valuable agenda for all attendees with interesting presentations and discussions. Patients shared that they really enjoyed the programme and gained important insights that will support them.
This week our President joined Humanidades médicas en diálogo, a unique forum uniting patients, healthcare professionals, and medical humanities experts to reflect on what it truly means to be a patient today.
November 23, 2025 at 2:14 PM
This week our President joined Humanidades médicas en diálogo, a unique forum uniting patients, healthcare professionals, and medical humanities experts to reflect on what it truly means to be a patient today.
At the E.S.PKU Delegates Meeting during #ESPKUConference2025, we discussed many important issues which include:
- Promotion of the European PKU Guidelines
- Full results of the “Living with PKU” survey
- Update of the E.S.PKU Advocacy Toolkit
- HTA across Europe
- Promotion of the European PKU Guidelines
- Full results of the “Living with PKU” survey
- Update of the E.S.PKU Advocacy Toolkit
- HTA across Europe
November 19, 2025 at 10:45 AM
At the E.S.PKU Delegates Meeting during #ESPKUConference2025, we discussed many important issues which include:
- Promotion of the European PKU Guidelines
- Full results of the “Living with PKU” survey
- Update of the E.S.PKU Advocacy Toolkit
- HTA across Europe
- Promotion of the European PKU Guidelines
- Full results of the “Living with PKU” survey
- Update of the E.S.PKU Advocacy Toolkit
- HTA across Europe
At #ESPKUConference2025 Prof. Anita MacDonald discussed new dietetic innovations:
✅️GMP benefits for gut & growth
✅️Additives in low-protein foods may disrupt microbiota
✅️3D food printing - customization & less waste
✅️Prolonged-release proteins improve metabolic control.
✅️GMP benefits for gut & growth
✅️Additives in low-protein foods may disrupt microbiota
✅️3D food printing - customization & less waste
✅️Prolonged-release proteins improve metabolic control.
November 7, 2025 at 10:01 AM
At #ESPKUConference2025 Prof. Anita MacDonald discussed new dietetic innovations:
✅️GMP benefits for gut & growth
✅️Additives in low-protein foods may disrupt microbiota
✅️3D food printing - customization & less waste
✅️Prolonged-release proteins improve metabolic control.
✅️GMP benefits for gut & growth
✅️Additives in low-protein foods may disrupt microbiota
✅️3D food printing - customization & less waste
✅️Prolonged-release proteins improve metabolic control.
November is #Movember We advocate and raise awareness of men's health. It's important for men to do necessary tests to monitor their health.
November 6, 2025 at 8:44 PM
November is #Movember We advocate and raise awareness of men's health. It's important for men to do necessary tests to monitor their health.
At #ESPKUConferene2025 Ania C Muntau shared valuable experiences from Germany with Sepiapterin and Pegvaliase therapies for PKU.
November 3, 2025 at 3:45 PM
At #ESPKUConferene2025 Ania C Muntau shared valuable experiences from Germany with Sepiapterin and Pegvaliase therapies for PKU.
At #ESPKUConference2025 the First Revision of the European PKU Guidelines was presented, with a detailed overview of the revision process. 📘 Participants discussed adult PHE targets 🎯📊 via a survey — most adults prefer stricter targets, even if potentially overtreated.
October 28, 2025 at 8:22 AM
At #ESPKUConference2025 the First Revision of the European PKU Guidelines was presented, with a detailed overview of the revision process. 📘 Participants discussed adult PHE targets 🎯📊 via a survey — most adults prefer stricter targets, even if potentially overtreated.
This week is #InvisibleDisabilitiesWeek 🌍
Conditions like #PKU may not be visible, but their impact is real.
Disability systems must evolve to recognize invisible challenges — support should depend on need, not appearance.
Conditions like #PKU may not be visible, but their impact is real.
Disability systems must evolve to recognize invisible challenges — support should depend on need, not appearance.
October 24, 2025 at 7:38 AM
This week is #InvisibleDisabilitiesWeek 🌍
Conditions like #PKU may not be visible, but their impact is real.
Disability systems must evolve to recognize invisible challenges — support should depend on need, not appearance.
Conditions like #PKU may not be visible, but their impact is real.
Disability systems must evolve to recognize invisible challenges — support should depend on need, not appearance.
🔬 We know the effects of #PKU in children — but what about adults? Neuropsychological, emotional, metabolic, and social challenges persist… yet research remains limited.
🧠 It’s time to focus on adults with PKU. We need more studies — and more patients willing to take part.
🧠 It’s time to focus on adults with PKU. We need more studies — and more patients willing to take part.
October 22, 2025 at 7:35 AM
🔬 We know the effects of #PKU in children — but what about adults? Neuropsychological, emotional, metabolic, and social challenges persist… yet research remains limited.
🧠 It’s time to focus on adults with PKU. We need more studies — and more patients willing to take part.
🧠 It’s time to focus on adults with PKU. We need more studies — and more patients willing to take part.
💊 #ESPKUConference2025: How can patient orgs help get drugs approved?
Message from 1 HTA expert and 2 patients orgs leaders:
🔹 Know your HTA & reimbursement process
🔹 Tell your story – it matters 💬
🔹 Don’t give up 💪
#PatientAdvocacy #PKU #RareDiseases #HealthPolicy
Message from 1 HTA expert and 2 patients orgs leaders:
🔹 Know your HTA & reimbursement process
🔹 Tell your story – it matters 💬
🔹 Don’t give up 💪
#PatientAdvocacy #PKU #RareDiseases #HealthPolicy
October 20, 2025 at 7:15 AM
💊 #ESPKUConference2025: How can patient orgs help get drugs approved?
Message from 1 HTA expert and 2 patients orgs leaders:
🔹 Know your HTA & reimbursement process
🔹 Tell your story – it matters 💬
🔹 Don’t give up 💪
#PatientAdvocacy #PKU #RareDiseases #HealthPolicy
Message from 1 HTA expert and 2 patients orgs leaders:
🔹 Know your HTA & reimbursement process
🔹 Tell your story – it matters 💬
🔹 Don’t give up 💪
#PatientAdvocacy #PKU #RareDiseases #HealthPolicy
Congratulations to Association nationale Les Feux Follets, our member organisation, on celebrating their 30th anniversary. 🎉 This weekend, they’re marking this special milestone during their annual conference 🇫🇷
October 18, 2025 at 10:31 AM
Congratulations to Association nationale Les Feux Follets, our member organisation, on celebrating their 30th anniversary. 🎉 This weekend, they’re marking this special milestone during their annual conference 🇫🇷
Today is #WorldMenopauseDay! 🌍
Women with #PKU face hormonal changes that can affect both metabolic control and mental health.
They deserve understanding, support, and research that helps them feel their best through every stage of life.
Women with #PKU face hormonal changes that can affect both metabolic control and mental health.
They deserve understanding, support, and research that helps them feel their best through every stage of life.
October 18, 2025 at 7:12 AM
Today is #WorldMenopauseDay! 🌍
Women with #PKU face hormonal changes that can affect both metabolic control and mental health.
They deserve understanding, support, and research that helps them feel their best through every stage of life.
Women with #PKU face hormonal changes that can affect both metabolic control and mental health.
They deserve understanding, support, and research that helps them feel their best through every stage of life.
🎀 October is #BreastCancerAwarenessMonth 🎀
Women with #PKU — remember:
🔹 Regular check-ups (USG or mammography)
🔹 Self-exams 👐
🔹 Inform your PKU doctor if anything unusual is found
💪 Early detection saves lives!
Women with #PKU — remember:
🔹 Regular check-ups (USG or mammography)
🔹 Self-exams 👐
🔹 Inform your PKU doctor if anything unusual is found
💪 Early detection saves lives!
October 15, 2025 at 1:47 PM
🎀 October is #BreastCancerAwarenessMonth 🎀
Women with #PKU — remember:
🔹 Regular check-ups (USG or mammography)
🔹 Self-exams 👐
🔹 Inform your PKU doctor if anything unusual is found
💪 Early detection saves lives!
Women with #PKU — remember:
🔹 Regular check-ups (USG or mammography)
🔹 Self-exams 👐
🔹 Inform your PKU doctor if anything unusual is found
💪 Early detection saves lives!
🌍 E.S.PKU President Eric Lange joined 'Low Protein Traces of Life: PKU Family Meetings' in Istanbul 🇹🇷, sharing European PKU updates, new treatments & importance of doctor–patient relationships. Grateful to PKU Turkey for the warm welcome! #PKU #ESPKU #PKUTurkey
October 14, 2025 at 7:43 AM
🌍 E.S.PKU President Eric Lange joined 'Low Protein Traces of Life: PKU Family Meetings' in Istanbul 🇹🇷, sharing European PKU updates, new treatments & importance of doctor–patient relationships. Grateful to PKU Turkey for the warm welcome! #PKU #ESPKU #PKUTurkey
How Europe defines Unmet Medical Need will shape the future of rare disease care. At #EHFG2025, ESPKU joined experts and patient voices to ensure PKU and rare communities are not left behind. #ESPKUatEHFG2025
October 12, 2025 at 10:43 AM
How Europe defines Unmet Medical Need will shape the future of rare disease care. At #EHFG2025, ESPKU joined experts and patient voices to ensure PKU and rare communities are not left behind. #ESPKUatEHFG2025
It's World Mental Health Day! We use #WMHD2025 to emphasize the influence of PKU on mental health of patients & their families. This year in accordance with the theme 'Mental health in humanitarian emergencies' we urge everyone to remember about patients that experience them.
October 10, 2025 at 6:06 PM
It's World Mental Health Day! We use #WMHD2025 to emphasize the influence of PKU on mental health of patients & their families. This year in accordance with the theme 'Mental health in humanitarian emergencies' we urge everyone to remember about patients that experience them.
'Patients Meet Professionals' one of the standout sessions at #ESPKUConference2025, shed light on the challenges adult PKU patients face in clinical settings 💡👥. It also highlighted the need for clearer communication and transparency around clinical trials 🔬🤝
October 9, 2025 at 1:12 PM
'Patients Meet Professionals' one of the standout sessions at #ESPKUConference2025, shed light on the challenges adult PKU patients face in clinical settings 💡👥. It also highlighted the need for clearer communication and transparency around clinical trials 🔬🤝
A big thank you from everyone at @espku.org to all those who joined our #EFHG2025 Panel discussion on: Defining Unmet Medical Need: What Counts?
October 2, 2025 at 6:14 PM
A big thank you from everyone at @espku.org to all those who joined our #EFHG2025 Panel discussion on: Defining Unmet Medical Need: What Counts?