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E.S.PKU @espku.org · 08/10/2026

📣 This is #tracesofpku👣 Encore. Late diagnosis does not mean it is too late for treatment! 📄 The revised European PKU Guidelines recommend individualised treatment and comprehensive support for late-diagnosed people with PKU, including mental health. #EUPKUGuidelines #pkumentalhealth

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E.S.PKU @espku.org · 06/10/2026

📣This is #tracesofpku👣 Encore. 🧠 Late-diagnosed #PKU can affect an entire family’s mental health. Parents, siblings and carers may carry worry, exhaustion and helplessness. Their wellbeing deserves support, too. #mentalhealth #mentalhealthday #pkumentalhealth #raredisease

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E.S.PKU @espku.org · 05/10/2026

📣This is #tracesofpku👣 Encore. Two sisters. Two different PKU journeys. Ilona was diagnosed late, while Manuela was diagnosed through newborn screening. Their stories show how diagnosis can affect mental health of individuals and families. 🎬 Watch: youtu.be/zJNo5dLnScM?...

youtu.be

The forgotten children

YouTube video by E.S.PKU

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E.S.PKU @espku.org · 04/10/2026

📣 In June, #tracesofpku👣 put mental health and PKU in the spotlight through stories from our community. Now, it’s time for an encore. Another story is waiting to be told. Coming soon. 👣

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E.S.PKU @espku.org · 04/10/2026

📢 PKU Guidelines Explained: Drug Treatment and PKU #EUPKUGuidelines 💊 What do the revised European PKU Guidelines say about pharmacological treatment? 🔗 Explore the infographic: www.espku.org/envira/guide...

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E.S.PKU @espku.org · 02/10/2026

📢 PKU Guidelines Explained: Late Diagnosed/Untreated PKU PKU #EUPKUGuidelines Newborn screening transformed PKU detection yet some individuals still reach childhood, adolescence, or adulthood without a diagnosis or appropriate care. Explore infographics: www.espku.org/envira/guide...

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E.S.PKU @espku.org · 27/09/2026

🎟️ TICKET SALES ARE NOW CLOSED! Thank you to everyone who has registered for the 40th E.S.PKU Conference! 📢 Before the conference, we'll share the most important information for participants right here so keep an eye on our upcoming posts. See you in Copenhagen!

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E.S.PKU @espku.org · 27/09/2026

Today's the last day when you can get Conference Ticket for #ESPKUConference2026 as at 20:00 CEST we close the sales. Don't miss the opportunity to participate in our anniversary Conference. To get your ticket go here: www.espku.org/conferences/...

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E.S.PKU @espku.org · 17/09/2026

We must not forget about those who were born before newborn screening was implemented in their countries. Late diagnosed people with PKU are group of our community rarely talked about. It has to change.

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E.S.PKU @espku.org · 17/09/2026

It's Newborn Screening Awareness Month! Every child must have access to that life saving procedure.

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E.S.PKU @espku.org · 14/09/2026

📣 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

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E.S.PKU @espku.org · 09/09/2026

🩸 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

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E.S.PKU @espku.org · 03/09/2026

📣 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...

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E.S.PKU @espku.org · 25/08/2026

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

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E.S.PKU @espku.org · 25/08/2026

📢 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.

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E.S.PKU @espku.org · 11/08/2026

📘 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...

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E.S.PKU @espku.org · 08/08/2026

📢 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

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E.S.PKU @espku.org · 06/08/2026

🧠 The psychology of feeling better will be explored during #ESPKUConference2026 by Susan Waisbren. 🎟️ Tickets are still available: www.espku.org/conferences/... #PKU #Phenylketonuria #RareDiseases

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E.S.PKU @espku.org · 05/08/2026

📢 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...

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E.S.PKU @espku.org · 03/08/2026

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

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E.S.PKU @espku.org · 31/07/2026

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/...

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E.S.PKU @espku.org · 29/07/2026

New publication! European PKU guidelines at a glance: infographics summarising key recommendations are published: www.sciencedirect.com/science/arti... Please like 👍 and share 🔄!

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E.S.PKU @espku.org · 28/07/2026

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.

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E.S.PKU @espku.org · 25/07/2026

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/...

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E.S.PKU @espku.org · 22/07/2026

📣 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!

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E.S.PKU @espku.org · 19/07/2026

We want to thank people who were faces of #tracesofpku👣 campaign organised for #IPKUDAY2026 and bravely discussed #pkumentalhealth

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E.S.PKU @espku.org · 12/07/2026

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

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E.S.PKU @espku.org · 09/07/2026

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

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E.S.PKU @espku.org · 09/07/2026

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.

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E.S.PKU @espku.org · 09/07/2026

Many PKU patient advocates have PKU themselves. Managing PKU highly influences their mental health. Advocacy adds another burden. #pkumentalhealth

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E.S.PKU @espku.org · 04/07/2026

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.

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E.S.PKU @espku.org · 03/07/2026

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...

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E.S.PKU @espku.org · 28/06/2026

This #IPKUDAY2026, share your #tracesofpku👣 If you are an adult living with PKU complete this survey about live here: pku.at/vewzjt

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E.S.PKU @espku.org · 28/06/2026

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...

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E.S.PKU @espku.org · 28/06/2026

Show us how you are celebrating International PKU Day! 🧐 Add #IPKUDAY2026 to your all publications.

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E.S.PKU @espku.org · 28/06/2026

Happy International PKU Day! #IPKUDAY2026 🎉

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E.S.PKU @espku.org · 27/06/2026

Today, as part of our #tracesofpku👣 campaign for #IPKUDAY2026, we share a reflection from Tobias Hagedorn a long-time patient advocate working both independently and through patient organisations. #pkumentalhealth

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E.S.PKU @espku.org · 26/06/2026

This week #tracesofpku👣, created for #IPKUDAY2026, hilds a conversation about the mental health and wellbeing of those who advocate for the PKU community. Today, Niko Costantino shares his perspective on this important topic. #pkumentalhealth

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E.S.PKU @espku.org · 25/06/2026

In this #tracesofpku testimony for #IPKUDay2026 Loïc Lalin, President of the French PKU Association, reflects on how advocacy has shaped his mental wellbeing, identity, and life with PKU. #pkumentalhealth

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E.S.PKU @espku.org · 24/06/2026

As part of #tracesofpku👣 campaign organized on the ocassion of #IPKUDAY2026, we're highlighting the voice of Laura Petreuș Sheila Jones Award winner and one of the most dedicated advocates in the PKU community. #pkumentalhealth

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E.S.PKU @espku.org · 23/06/2026

Patient advocates carry a tremendous responsibility. Along with it come the hopes, expectations, frustrations, and urgency of an entire community. While they work to improve the lives of others, let's remember that their mental health matters too. #tracesofpku👣 #IPKUDAY2026 #pkumentalhealth

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E.S.PKU @espku.org · 22/06/2026

📣 Today, we begin another week of the #tracesofpku👣 campaign, organized for #IPKUDAY2026! This week, we are opening a conversation that has never before been discussed so openly within the PKU community: 🧠 The mental health of patient advocates.

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E.S.PKU @espku.org · 21/06/2026

Today in #tracesofpku our campaign organised for #IPKUDAY2026 want to shy a light that live with PKU and its management is negatively influenced by what happens in our life: serious illness, trauma, caregiving responsibilities and other major life challenges. #pkumentalhealth

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E.S.PKU @espku.org · 21/06/2026

Today let's take a moment to appreciate and celebrate fathers in our community. Their part in caring and helping kids and people with PKU is very appreciated.

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E.S.PKU @espku.org · 19/06/2026

Trust your gut. If you have symptoms that are similar to those typical for high phe levels but you feel high phe levels are not the explanation don't give up and, like Gavin, search answers. Not everything is #tracesofpku #IPKUDAY2026 #pkumentalhealth #adultpkuawareness

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E.S.PKU @espku.org · 17/06/2026

During #tracesofpku👣 campaign organised for #IPKUDAY2026 on Facebook and Instagram we asked adults and seniors with pku if they are satisfied with their PKU care. Below you can find the answers. #pkumentalhealth

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E.S.PKU @espku.org · 17/06/2026

Today during #tracesofpku👣 campaign organised for #IPKUDAY2026 we start telling Gavin's story. #pkumentalhealth #adultpkuawareness Share it so it reaches as many people as possible.

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E.S.PKU @espku.org · 16/06/2026

👣#tracesofpku etched in hope, honoured by the Order of Australia (OAM). #ipkuday2026 #pkumentalhealth #adultpkuawareness

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