Today is the last day to fill the survey on gastrointestinal symptoms in people with PKU. Go to: forms.office.com/e/B6kEkTKCCN...

Recommendation 25 and Recommendation 26 of #EuropeanPKUGuidelines point that patients should be transferred from pediatric to adult care in a structured way. Patients who lost contact with their metabolic team should always be welcomed back.

Adults with PKU still treated in children’s hospitals in parts of Europe. This must change.
Adults need adult metabolic teams for lifelong care, pregnancy planning, mental health & comorbidities.
Build transition pathways. Fund adult services. Prevent loss to follow-up.

If you haven't filled the survey on gastrointestinal symptoms in people with PKU please do it as soon as possible. The deadline is Friday April 10th. Go to:
forms.office.com/e/B6kEkTKCCN...

We need research to transform patients' experiences into research data. We need patients and their families to participate in that research.

Every journey leaves marks. Some you can see, some you can only feel. 👣

During this year’s International PKU Day #IPKUDAY2026 campaign, we will invite you to reflect on how living with PKU influences how you feel.

📢 Urgent reminder!

Help us transform patients experiences into scientific evidence! If you haven't filled the survey on gastrointestinal symptoms in patients with PKU do it now! Go to:

forms.office.com/e/B6kEkTKCCN...

Recommendation 52 clearly states that people with PKU should lead active lifestyle to prevent overweight and obesity.

Patient advocates, PKU organisations should promote physical activity in people with PKU and metabolic clinics should frequently remind patients about it.

European PKU Guidelines note that overweight rates may be similar to the general population but it still matters
🔹 Higher risk in females
🔹 Linked to poor metabolic control
🔹 Physical activity plays a key role

❤️ Cardiometabolic health should be monitored
👉 Focus on overall health, not just weight.

We happy to welcome PKU Nederlandse PKU Vereniging, the Dutch PKU Association, to E.S. PKU!

Persons with #PKU participated in our Spring Meeting. Everyone was impressed with low protein dishes served last weekend. Thank you to the team at Clarion Hotel in Copenhagen and our hosts Danish PKU Association.

🌍 On March 14, PKU delegates from across Europe gathered in Copenhagen for E.S.PKU Spring Meeting so far.
✔️ Key topics included advocacy, new PKU therapies, the Home Blood Monitoring Kit, and #IPKUDAY2026 awareness campaign.
🤝 Thank you to the Danish PKU Organization for hosting!

New European PKU guidelines (May 2025) recommend that Phe results should reach patients within 2 working days after the lab receives the sample.

Many families still wait longer.

Fast results = faster diet decisions and better Phe control.

#PKU #Phenylketonuria #RareDisease

For people living with PKU, checking phenylalanine (Phe) levels regularly is a very important part of staying healthy. According to the European PKU Guidelines, once the laboratory receives the sample, the result should be reported within a maximum of 2 working days. ⏱️

Many women with PKU are very active in the community and help everyone who needs support. 🙏

🌸 On #IWD2026 we celebrate the incredible women of the PKU community.

Women with PKU are managing their condition while caring for families, building careers and supporting others.

More research on women’s health in PKU is still needed, especially around hormonal changes and menopause.

📸 Do you recognize this girl?
The vast majority of the PKU community did — and many expressed gratitude to Sheila Jones. 🙏

Know a parent who fought for a PKU diagnosis and better care for children?

🏆 Nominate them for the Sheila Jones Award:
www.espku.org/sheila-jones...

🦷 Dental care in #PKU is very important. Remember Phenylketonuria itself doesn't damage teeth. Frequent meals or snacks,regular use of protein substitutes (often acidic), higher carbohydrate intake, irregular brushing or flossing and skipping dental check-ups influence bad dental condition in PKUs.

Nominations for the Sheila Jones Award are now open! 🏆 Nominate a person, group of people or an organization. Click here to nominate:
espku.org/sheila-jones...

In 4 months we will celebrate International PKU Day. This graphic is a hint about the title and the theme of this year's campaign #IPKUDAY2026 Any ideas?

Happy Rare Disease Day! 🎉 Today we not only celebrate the resilience of people with Phenylketonuria. We also highlight their needs to allow them thrive regardless of who they are 👶🧒👧🧔‍♂️👩‍🦰👩‍🦳🧑‍🦳 and where they live.

In the latest European PKU Guidelines physical activity of people with PKU was analyzed and resulted in a Guideline 53. We encourage everyone to read the whole European PKU Guidelines: sciencedirect.com/science/arti...

Physical activity in PKU is safe and recommended.

Moderate exercise does not significantly increase Phe levels, and regular activity supports cardiovascular health, muscle strength, and overall wellbeing.

PKU ≠ limitation.
Movement is part of care. 🏃‍♀️🏃

Gut health and microbiome in people with PKU were analyzed and resulted in guideline in newest European PKU Guidelines. Read them here: www.sciencedirect.com/science/arti...

Living with Phenylketonuria and gut symptoms?

Anonymous survey now open.
👤 Adults 16+
👨‍👩‍👧 Parents/carers
🌍 Anywhere in the world

⏱ ~20 min | 🔒 Voluntary

Have your say: www.pku.at/hkagzo

PKU is more than phenylalanine levels. Many people with PKU experience digestive issues like constipation, bloating, reflux or stomach discomfort. Gut health is part of PKU care.

#PKU #GutHealth #RareDisease #adultpkuawareness

❗️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.

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

📢 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 🤝