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.
❗️Delegates Reminder ❗️
Only 7 days left to register for the Spring Meeting in Copenhagen.
Join discussions on political activity, advocacy, and key projects and help shape the future of E.S.PKU.
➡️ Register now via our dedicated platform.
Only 7 days left to register for the Spring Meeting in Copenhagen.
Join discussions on political activity, advocacy, and key projects and help shape the future of E.S.PKU.
➡️ Register now via our dedicated platform.
February 13, 2026 at 11:34 AM
❗️Delegates Reminder ❗️
Only 7 days left to register for the Spring Meeting in Copenhagen.
Join discussions on political activity, advocacy, and key projects and help shape the future of E.S.PKU.
➡️ Register now via our dedicated platform.
Only 7 days left to register for the Spring Meeting in Copenhagen.
Join discussions on political activity, advocacy, and key projects and help shape the future of E.S.PKU.
➡️ Register now via our dedicated platform.
At the European Parliament’s “It’s Rare For Me” exhibition, E.S.PKU stressed that timely diagnosis and lifelong care matter. Many adults with #PKU still lack specialist follow-up, proving rare diseases are not “solved” and unmet needs remain across Europe.
#adultpkuawareness
#adultpkuawareness
February 12, 2026 at 4:35 PM
At the European Parliament’s “It’s Rare For Me” exhibition, E.S.PKU stressed that timely diagnosis and lifelong care matter. Many adults with #PKU still lack specialist follow-up, proving rare diseases are not “solved” and unmet needs remain across Europe.
#adultpkuawareness
#adultpkuawareness
📢 The E.S.PKU Spring Meeting will take place March 13–15 in Copenhagen 🇩🇰 🗓️
Delegates from member organizations can register their participation via the dedicated platform: 👉 delegates.espku.org
We look forward to seeing you and having productive discussions 🤝
Delegates from member organizations can register their participation via the dedicated platform: 👉 delegates.espku.org
We look forward to seeing you and having productive discussions 🤝
February 10, 2026 at 6:41 PM
📢 The E.S.PKU Spring Meeting will take place March 13–15 in Copenhagen 🇩🇰 🗓️
Delegates from member organizations can register their participation via the dedicated platform: 👉 delegates.espku.org
We look forward to seeing you and having productive discussions 🤝
Delegates from member organizations can register their participation via the dedicated platform: 👉 delegates.espku.org
We look forward to seeing you and having productive discussions 🤝
E.S.PKU continues to influence EU policy for PKU through partnerships, and evidence-based advocacy.
In 2026, we remain committed to improving care and outcomes across Europe. 🇪🇺
Follow E.S.PKU and join us in turning dialogue into impact.
In 2026, we remain committed to improving care and outcomes across Europe. 🇪🇺
Follow E.S.PKU and join us in turning dialogue into impact.
February 10, 2026 at 6:41 PM
E.S.PKU continues to influence EU policy for PKU through partnerships, and evidence-based advocacy.
In 2026, we remain committed to improving care and outcomes across Europe. 🇪🇺
Follow E.S.PKU and join us in turning dialogue into impact.
In 2026, we remain committed to improving care and outcomes across Europe. 🇪🇺
Follow E.S.PKU and join us in turning dialogue into impact.
Today is #WorldCancerDay and we join #UnitedbybyUnique campaig. When a person with #PKU is diagnosed with cancer rare becomes unique. It's essential to inform your PKU doctor about cancer diagnosis. It's important for oncologists to cooperate with PKU clinics.
February 4, 2026 at 9:30 AM
Today is #WorldCancerDay and we join #UnitedbybyUnique campaig. When a person with #PKU is diagnosed with cancer rare becomes unique. It's essential to inform your PKU doctor about cancer diagnosis. It's important for oncologists to cooperate with PKU clinics.
🔬 Call for Research: Adults ageing with PKU face unanswered questions about health, therapy management, and independence in later life. Evidence is urgently needed to support safe, dignified ageing. Researchers & patient organizations: let’s act.
#PKUadultawareness #seniorpku
#PKUadultawareness #seniorpku
February 2, 2026 at 7:38 AM
🔬 Call for Research: Adults ageing with PKU face unanswered questions about health, therapy management, and independence in later life. Evidence is urgently needed to support safe, dignified ageing. Researchers & patient organizations: let’s act.
#PKUadultawareness #seniorpku
#PKUadultawareness #seniorpku
👀 A small hint for #IPKUDAY2026 is out. What do you think this year’s theme will be? 💙
#InternationalPKUDay #PKUCommunity
#InternationalPKUDay #PKUCommunity
January 28, 2026 at 9:40 AM
👀 A small hint for #IPKUDAY2026 is out. What do you think this year’s theme will be? 💙
#InternationalPKUDay #PKUCommunity
#InternationalPKUDay #PKUCommunity
In an interview for the #pkulifestories campaign, Maria Kozon shared how the way we talk about PKU influences how others perceive it—and us. By being open, calm, and honest, she shows that PKU is part of life, not something that defines a person.
January 9, 2026 at 4:36 PM
In an interview for the #pkulifestories campaign, Maria Kozon shared how the way we talk about PKU influences how others perceive it—and us. By being open, calm, and honest, she shows that PKU is part of life, not something that defines a person.
ESPKU's policy paper
📄 'CAPTURING THE FULL PICTURE Unmet Medical Need in PKU' strongly states that PKU is more than a metabolic disorder 🧠
Lifelong stress ⏰ social exclusion 🍽️ family impact 👨👩👧👦
Care must go beyond Phe control — mental health & inclusion matter.
📄 'CAPTURING THE FULL PICTURE Unmet Medical Need in PKU' strongly states that PKU is more than a metabolic disorder 🧠
Lifelong stress ⏰ social exclusion 🍽️ family impact 👨👩👧👦
Care must go beyond Phe control — mental health & inclusion matter.
January 3, 2026 at 1:24 PM
ESPKU's policy paper
📄 'CAPTURING THE FULL PICTURE Unmet Medical Need in PKU' strongly states that PKU is more than a metabolic disorder 🧠
Lifelong stress ⏰ social exclusion 🍽️ family impact 👨👩👧👦
Care must go beyond Phe control — mental health & inclusion matter.
📄 'CAPTURING THE FULL PICTURE Unmet Medical Need in PKU' strongly states that PKU is more than a metabolic disorder 🧠
Lifelong stress ⏰ social exclusion 🍽️ family impact 👨👩👧👦
Care must go beyond Phe control — mental health & inclusion matter.
We wish everyone Happy New Year 2026!
December 31, 2025 at 11:22 PM
We wish everyone Happy New Year 2026!
Living with PKU comes with a heavy financial burden. In Poland, low-protein food essential for treatment is not reimbursed. This limits access, increases pressure on families, and risks long-term health.
🎥 #pkulifestories with Maria Kozon
👉 www.pku.at/fhypjc
🎥 #pkulifestories with Maria Kozon
👉 www.pku.at/fhypjc
December 30, 2025 at 9:32 AM
Living with PKU comes with a heavy financial burden. In Poland, low-protein food essential for treatment is not reimbursed. This limits access, increases pressure on families, and risks long-term health.
🎥 #pkulifestories with Maria Kozon
👉 www.pku.at/fhypjc
🎥 #pkulifestories with Maria Kozon
👉 www.pku.at/fhypjc
📢 PKU unmet needs still persist in Europe. Early diagnosis isn’t enough.
People with PKU face lifelong gaps in care:
👶➡️👩 no adult services
🎓 low HCP awareness
🥗 diet & reimbursement barriers
💰 inequality
Read more here: www.pku.at/twz6c7
People with PKU face lifelong gaps in care:
👶➡️👩 no adult services
🎓 low HCP awareness
🥗 diet & reimbursement barriers
💰 inequality
Read more here: www.pku.at/twz6c7
December 28, 2025 at 7:33 PM
📢 PKU unmet needs still persist in Europe. Early diagnosis isn’t enough.
People with PKU face lifelong gaps in care:
👶➡️👩 no adult services
🎓 low HCP awareness
🥗 diet & reimbursement barriers
💰 inequality
Read more here: www.pku.at/twz6c7
People with PKU face lifelong gaps in care:
👶➡️👩 no adult services
🎓 low HCP awareness
🥗 diet & reimbursement barriers
💰 inequality
Read more here: www.pku.at/twz6c7
We wish you a Christmas filled with peace, warmth, and hope 🎄🌟
December 24, 2025 at 7:29 PM
We wish you a Christmas filled with peace, warmth, and hope 🎄🌟
In the interview for #pkulifestories campaign Maria Kozon shares these unseen challenges and reminds us how vital empathy and self-compassion are
Watch here: youtu.be/PkLqKxCrJcs?...
Watch here: youtu.be/PkLqKxCrJcs?...
December 23, 2025 at 2:27 PM
In the interview for #pkulifestories campaign Maria Kozon shares these unseen challenges and reminds us how vital empathy and self-compassion are
Watch here: youtu.be/PkLqKxCrJcs?...
Watch here: youtu.be/PkLqKxCrJcs?...
📄 E.S.PKU published a policy paper on Unmet Medical Need in PKU.
As the EU revises its pharmaceutical legislation, how UMN is defined will shape innovation and patient access. PKU shows why unmet needs must be defined correctly.
👉 Read more:
www.espku.org/2024/11/27/u...
As the EU revises its pharmaceutical legislation, how UMN is defined will shape innovation and patient access. PKU shows why unmet needs must be defined correctly.
👉 Read more:
www.espku.org/2024/11/27/u...
December 18, 2025 at 6:05 PM
📄 E.S.PKU published a policy paper on Unmet Medical Need in PKU.
As the EU revises its pharmaceutical legislation, how UMN is defined will shape innovation and patient access. PKU shows why unmet needs must be defined correctly.
👉 Read more:
www.espku.org/2024/11/27/u...
As the EU revises its pharmaceutical legislation, how UMN is defined will shape innovation and patient access. PKU shows why unmet needs must be defined correctly.
👉 Read more:
www.espku.org/2024/11/27/u...
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.
🚀 The moment has come! We’re premiering our inspiring interview with Maria Kozon, an adult living with PKU, as part of the #pkulifestories campaign! 🎬
Maria shares insights, real-life experiences, and motivation that everyone should hear. 💡
👇 Watch here:
youtu.be/PkLqKxCrJcs?...
Maria shares insights, real-life experiences, and motivation that everyone should hear. 💡
👇 Watch here:
youtu.be/PkLqKxCrJcs?...
Interviewing Maria (a PKU adult)
YouTube video by E.S.PKU
youtu.be
December 4, 2025 at 8:29 AM
🚀 The moment has come! We’re premiering our inspiring interview with Maria Kozon, an adult living with PKU, as part of the #pkulifestories campaign! 🎬
Maria shares insights, real-life experiences, and motivation that everyone should hear. 💡
👇 Watch here:
youtu.be/PkLqKxCrJcs?...
Maria shares insights, real-life experiences, and motivation that everyone should hear. 💡
👇 Watch here:
youtu.be/PkLqKxCrJcs?...
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.