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.
📣 European PKU Guidelines Explained: Maternal PKU. Avoid Unplanned Pregnancies, Monitoring of Blood PHE levels, avoiding low PHE levels are just some recommendations highlighted in this infographic. #femalepku #adultpkuawareness
September 14, 2026 at 8:00 AM
📣 European PKU Guidelines Explained: Maternal PKU. Avoid Unplanned Pregnancies, Monitoring of Blood PHE levels, avoiding low PHE levels are just some recommendations highlighted in this infographic. #femalepku #adultpkuawareness
🩸 Home Blood Monitoring in PKU where are we now?
One of the hot topics in the global PKU community will be explored at the 40th E.S.PKU Conference in Copenhagen.
#ESPKUConference2026 #40ConferencesOneCommunity #PKU
One of the hot topics in the global PKU community will be explored at the 40th E.S.PKU Conference in Copenhagen.
#ESPKUConference2026 #40ConferencesOneCommunity #PKU
September 9, 2026 at 3:35 PM
🩸 Home Blood Monitoring in PKU where are we now?
One of the hot topics in the global PKU community will be explored at the 40th E.S.PKU Conference in Copenhagen.
#ESPKUConference2026 #40ConferencesOneCommunity #PKU
One of the hot topics in the global PKU community will be explored at the 40th E.S.PKU Conference in Copenhagen.
#ESPKUConference2026 #40ConferencesOneCommunity #PKU
📣 Help us improve life for adults with PKU!
Are you 30+ and don't have PKU? Your experience can provide an important comparison for international PKU research.
Fill this questionnaire:
forms.cloud.microsoft/e/qUbvihRb6U...
Are you 30+ and don't have PKU? Your experience can provide an important comparison for international PKU research.
Fill this questionnaire:
forms.cloud.microsoft/e/qUbvihRb6U...
September 3, 2026 at 7:10 AM
📣 Help us improve life for adults with PKU!
Are you 30+ and don't have PKU? Your experience can provide an important comparison for international PKU research.
Fill this questionnaire:
forms.cloud.microsoft/e/qUbvihRb6U...
Are you 30+ and don't have PKU? Your experience can provide an important comparison for international PKU research.
Fill this questionnaire:
forms.cloud.microsoft/e/qUbvihRb6U...
Greetings from the first day of the 2026 SSIEM Conference in Helsinki!
Tobias S. Hagedorn reports on a lively debate about strict versus liberal approaches to adult PKU care—and the need to balance safety with treatment burden.
#SSIEM2026 #adultPKUawareness
Tobias S. Hagedorn reports on a lively debate about strict versus liberal approaches to adult PKU care—and the need to balance safety with treatment burden.
#SSIEM2026 #adultPKUawareness
August 25, 2026 at 8:14 PM
Greetings from the first day of the 2026 SSIEM Conference in Helsinki!
Tobias S. Hagedorn reports on a lively debate about strict versus liberal approaches to adult PKU care—and the need to balance safety with treatment burden.
#SSIEM2026 #adultPKUawareness
Tobias S. Hagedorn reports on a lively debate about strict versus liberal approaches to adult PKU care—and the need to balance safety with treatment burden.
#SSIEM2026 #adultPKUawareness
📢 PKU Guidelines: Healthy Living with PKU. #EUPKUGuidelines
Healthy living with PKU is about more than Phe levels. 🧠🥗🏃
The revised European PKU Guidelines highlight a lifelong, holistic approach supporting physical health, nutrition, mental well-being, cognition and quality of life.
Healthy living with PKU is about more than Phe levels. 🧠🥗🏃
The revised European PKU Guidelines highlight a lifelong, holistic approach supporting physical health, nutrition, mental well-being, cognition and quality of life.
August 25, 2026 at 12:30 PM
📢 PKU Guidelines: Healthy Living with PKU. #EUPKUGuidelines
Healthy living with PKU is about more than Phe levels. 🧠🥗🏃
The revised European PKU Guidelines highlight a lifelong, holistic approach supporting physical health, nutrition, mental well-being, cognition and quality of life.
Healthy living with PKU is about more than Phe levels. 🧠🥗🏃
The revised European PKU Guidelines highlight a lifelong, holistic approach supporting physical health, nutrition, mental well-being, cognition and quality of life.
📘 PKU Guidelines Explained: Dietary Management in PKU.
Effective dietary management remains a cornerstone of phenylketonuria (PKU) care.
📥 www.espku.org/envira/guide...
📖 www.sciencedirect.com/science/arti...
Effective dietary management remains a cornerstone of phenylketonuria (PKU) care.
📥 www.espku.org/envira/guide...
📖 www.sciencedirect.com/science/arti...
August 11, 2026 at 6:05 PM
📘 PKU Guidelines Explained: Dietary Management in PKU.
Effective dietary management remains a cornerstone of phenylketonuria (PKU) care.
📥 www.espku.org/envira/guide...
📖 www.sciencedirect.com/science/arti...
Effective dietary management remains a cornerstone of phenylketonuria (PKU) care.
📥 www.espku.org/envira/guide...
📖 www.sciencedirect.com/science/arti...
📢 PKU Guidelines Explained: Monitoring and Follow-up in PKU
🩺 Lifelong monitoring and specialist follow-up are essential parts of PKU care.
Explore the latest recommendations and help put them into practice.
🔗 www.espku.org/envira/guide...
#EUPKUGuidelines #PKU #Phenylketonuria
🩺 Lifelong monitoring and specialist follow-up are essential parts of PKU care.
Explore the latest recommendations and help put them into practice.
🔗 www.espku.org/envira/guide...
#EUPKUGuidelines #PKU #Phenylketonuria
August 8, 2026 at 9:22 AM
📢 PKU Guidelines Explained: Monitoring and Follow-up in PKU
🩺 Lifelong monitoring and specialist follow-up are essential parts of PKU care.
Explore the latest recommendations and help put them into practice.
🔗 www.espku.org/envira/guide...
#EUPKUGuidelines #PKU #Phenylketonuria
🩺 Lifelong monitoring and specialist follow-up are essential parts of PKU care.
Explore the latest recommendations and help put them into practice.
🔗 www.espku.org/envira/guide...
#EUPKUGuidelines #PKU #Phenylketonuria
🧠 The psychology of feeling better will be explored during #ESPKUConference2026 by Susan Waisbren.
🎟️ Tickets are still available: www.espku.org/conferences/...
#PKU #Phenylketonuria #RareDiseases
🎟️ Tickets are still available: www.espku.org/conferences/...
#PKU #Phenylketonuria #RareDiseases
August 6, 2026 at 8:16 AM
🧠 The psychology of feeling better will be explored during #ESPKUConference2026 by Susan Waisbren.
🎟️ Tickets are still available: www.espku.org/conferences/...
#PKU #Phenylketonuria #RareDiseases
🎟️ Tickets are still available: www.espku.org/conferences/...
#PKU #Phenylketonuria #RareDiseases
📢 PKU Guidelines Explained: When to initiate treatment & treatment goals.
Early diagnosis, timely treatment and lifelong specialist follow-up are key to better outcomes in PKU.
Infographics:
www.espku.org/envira/guide...
Guidelines:
www.sciencedirect.com/science/arti...
Early diagnosis, timely treatment and lifelong specialist follow-up are key to better outcomes in PKU.
Infographics:
www.espku.org/envira/guide...
Guidelines:
www.sciencedirect.com/science/arti...
August 5, 2026 at 8:31 AM
📢 PKU Guidelines Explained: When to initiate treatment & treatment goals.
Early diagnosis, timely treatment and lifelong specialist follow-up are key to better outcomes in PKU.
Infographics:
www.espku.org/envira/guide...
Guidelines:
www.sciencedirect.com/science/arti...
Early diagnosis, timely treatment and lifelong specialist follow-up are key to better outcomes in PKU.
Infographics:
www.espku.org/envira/guide...
Guidelines:
www.sciencedirect.com/science/arti...
PKU Guidelines Explained: #NewbornScreening and Diagnosis of PKU.
The latest infographic presents the key recommendations on newborn screening and diagnosis from the revised European PKU Guidelines.
View the full infographic collection: www.espku.org/envira/guide...
#EUPKUGuidelines #PKU
The latest infographic presents the key recommendations on newborn screening and diagnosis from the revised European PKU Guidelines.
View the full infographic collection: www.espku.org/envira/guide...
#EUPKUGuidelines #PKU
August 3, 2026 at 8:04 AM
PKU Guidelines Explained: #NewbornScreening and Diagnosis of PKU.
The latest infographic presents the key recommendations on newborn screening and diagnosis from the revised European PKU Guidelines.
View the full infographic collection: www.espku.org/envira/guide...
#EUPKUGuidelines #PKU
The latest infographic presents the key recommendations on newborn screening and diagnosis from the revised European PKU Guidelines.
View the full infographic collection: www.espku.org/envira/guide...
#EUPKUGuidelines #PKU
Maternal PKU and Child Outcomes: Can the Copenhagen Team Close the Knowledge Gaps?
Join this thought-provoking session at #ESPKUConference2026.
🎟️ Conference tickets: www.espku.org/conferences/...
Join this thought-provoking session at #ESPKUConference2026.
🎟️ Conference tickets: www.espku.org/conferences/...
July 31, 2026 at 6:28 AM
Maternal PKU and Child Outcomes: Can the Copenhagen Team Close the Knowledge Gaps?
Join this thought-provoking session at #ESPKUConference2026.
🎟️ Conference tickets: www.espku.org/conferences/...
Join this thought-provoking session at #ESPKUConference2026.
🎟️ Conference tickets: www.espku.org/conferences/...
New publication!
European PKU guidelines at a glance: infographics summarising key recommendations are published:
www.sciencedirect.com/science/arti...
Please like 👍 and share 🔄!
European PKU guidelines at a glance: infographics summarising key recommendations are published:
www.sciencedirect.com/science/arti...
Please like 👍 and share 🔄!
July 29, 2026 at 1:21 PM
New publication!
European PKU guidelines at a glance: infographics summarising key recommendations are published:
www.sciencedirect.com/science/arti...
Please like 👍 and share 🔄!
European PKU guidelines at a glance: infographics summarising key recommendations are published:
www.sciencedirect.com/science/arti...
Please like 👍 and share 🔄!
Are you 16+ and living with PKU?
Help strengthen the scientific evidence on adult PKU by completing the Daily Living for Adults with PKU questionnaire. It takes about 25 minutes.
pku.at/vewzjt
Like & share to help us reach more adults with PKU.
Help strengthen the scientific evidence on adult PKU by completing the Daily Living for Adults with PKU questionnaire. It takes about 25 minutes.
pku.at/vewzjt
Like & share to help us reach more adults with PKU.
July 28, 2026 at 7:08 AM
Are you 16+ and living with PKU?
Help strengthen the scientific evidence on adult PKU by completing the Daily Living for Adults with PKU questionnaire. It takes about 25 minutes.
pku.at/vewzjt
Like & share to help us reach more adults with PKU.
Help strengthen the scientific evidence on adult PKU by completing the Daily Living for Adults with PKU questionnaire. It takes about 25 minutes.
pku.at/vewzjt
Like & share to help us reach more adults with PKU.
Today's the last day to submit an abstract on research and developments in PKU by professionals for oral presentation at the ESPKU meeting for professionals, on Friday, 23rd October 2026.
Submit here: www.espku.org/conferences/...
Submit here: www.espku.org/conferences/...
July 25, 2026 at 9:23 AM
Today's the last day to submit an abstract on research and developments in PKU by professionals for oral presentation at the ESPKU meeting for professionals, on Friday, 23rd October 2026.
Submit here: www.espku.org/conferences/...
Submit here: www.espku.org/conferences/...
📣 Discover PKU in Denmark 🇩🇰 at #ESPKUConference2026!
Kirsten Ahring will present experiences with PKU in Denmark.
Don't miss this opportunity to join the 40th E.S.PKU Conference!
Kirsten Ahring will present experiences with PKU in Denmark.
Don't miss this opportunity to join the 40th E.S.PKU Conference!
July 22, 2026 at 7:43 AM
📣 Discover PKU in Denmark 🇩🇰 at #ESPKUConference2026!
Kirsten Ahring will present experiences with PKU in Denmark.
Don't miss this opportunity to join the 40th E.S.PKU Conference!
Kirsten Ahring will present experiences with PKU in Denmark.
Don't miss this opportunity to join the 40th E.S.PKU Conference!
We want to thank people who were faces of #tracesofpku👣 campaign organised for #IPKUDAY2026 and bravely discussed #pkumentalhealth
July 19, 2026 at 11:04 AM
We want to thank people who were faces of #tracesofpku👣 campaign organised for #IPKUDAY2026 and bravely discussed #pkumentalhealth
There's a reality of living with PKU that's not talked about. Cooking for family that is not on PKU diet e.g.: meat, fish. It requires good organisation, logistics, more time than normally and skills non PKUers don't need. #adultpkuawareness
July 12, 2026 at 11:18 AM
There's a reality of living with PKU that's not talked about. Cooking for family that is not on PKU diet e.g.: meat, fish. It requires good organisation, logistics, more time than normally and skills non PKUers don't need. #adultpkuawareness
Mental health of patient advocates is something we must talk about. We must not forget that advocacy its ups and downs influence mental health of advocates and if pressure is too high they may resign. #pkumentalhealth
July 9, 2026 at 7:21 PM
Mental health of patient advocates is something we must talk about. We must not forget that advocacy its ups and downs influence mental health of advocates and if pressure is too high they may resign. #pkumentalhealth
Advocacy has also positive influence on patient advocates. The awareness of their condition is bigger and they gain skills that may be useful in their jobs.
July 9, 2026 at 7:17 PM
Advocacy has also positive influence on patient advocates. The awareness of their condition is bigger and they gain skills that may be useful in their jobs.
Many PKU patient advocates have PKU themselves. Managing PKU highly influences their mental health. Advocacy adds another burden. #pkumentalhealth
July 9, 2026 at 7:14 PM
Many PKU patient advocates have PKU themselves. Managing PKU highly influences their mental health. Advocacy adds another burden. #pkumentalhealth
Pressure from patients, authorities and other members of the PKU community influence mental health of patient advocates. Handing these situations rewrites appropriate skills and the support from the community.
July 4, 2026 at 9:45 AM
Pressure from patients, authorities and other members of the PKU community influence mental health of patient advocates. Handing these situations rewrites appropriate skills and the support from the community.
Patient advocates are often the people others turn to in times of crisis. They listen, explain, support and carry the stories of countless individuals and families.
Yet their own wellbeing is rarely part of the conversation.
📖 Read the full article: www.espku.org/2026/06/28/i...
Yet their own wellbeing is rarely part of the conversation.
📖 Read the full article: www.espku.org/2026/06/28/i...
July 3, 2026 at 9:30 AM
Patient advocates are often the people others turn to in times of crisis. They listen, explain, support and carry the stories of countless individuals and families.
Yet their own wellbeing is rarely part of the conversation.
📖 Read the full article: www.espku.org/2026/06/28/i...
Yet their own wellbeing is rarely part of the conversation.
📖 Read the full article: www.espku.org/2026/06/28/i...
This #IPKUDAY2026, share your #tracesofpku👣 If you are an adult living with PKU complete this survey about live here: pku.at/vewzjt
June 28, 2026 at 1:59 PM
This #IPKUDAY2026, share your #tracesofpku👣 If you are an adult living with PKU complete this survey about live here: pku.at/vewzjt
On #IPKUDAY2026 we encourage you to read and share article about mental health of patient advocates #pkumentalhealth written by our secretary Małgorzata Henek and Kevin Aleksander Patient Advocate:
www.espku.org/2026/06/28/i...
www.espku.org/2026/06/28/i...
June 28, 2026 at 8:21 AM
On #IPKUDAY2026 we encourage you to read and share article about mental health of patient advocates #pkumentalhealth written by our secretary Małgorzata Henek and Kevin Aleksander Patient Advocate:
www.espku.org/2026/06/28/i...
www.espku.org/2026/06/28/i...
Show us how you are celebrating International PKU Day! 🧐 Add #IPKUDAY2026 to your all publications.
June 28, 2026 at 6:30 AM
Show us how you are celebrating International PKU Day! 🧐 Add #IPKUDAY2026 to your all publications.