PKU Foreningen for Danmark

20/03/2026

Endelig weekend 🍦✨
Vi fejrer det med en portion lækker lavprotein is fra - perfekt som lille forkælelse efter en lang uge! 😋
Hvad er din yndlingssmag? 💚

15/03/2026

Skal du være en del af vores skønne bestyrelse? Vi er en super hyggelig lille flok, der brænder for at gøre en forskel inden for PKU! Endda så meget, at vi har brug for mange flere hænder - om ikke andet så bare et par stykker 🤩

Skal du være med? Så skriv endelig til os på [email protected]

12/03/2026

I weekenden er vi til ESPKU Spring Meeting på Clarion Hotel ✨

Her mødes vi sammen med ESPKU’s bestyrelse for at planlægge og koordinere detaljer omkring ESPKU konferencen, som finder sted her i Danmark til oktober 🇩🇰
Det bliver spændende at lægge de sidste brikker til et stort europæisk arrangement for PKU-familier og fagfolk 💚
Følg med her på siden – vi glæder os til at dele flere nyheder og glimt fra planlægningen!

Clarion Hotel Copenhagen Airport

10/03/2026

🧬 Hvorfor er hurtige Phe-svar så vigtige?

For alle, der lever med PKU, er det helt afgørende regelmæssigt at tjekke sit phenylalanin (Phe)-niveau for at holde sig sund. Mange familier tager blodprøver derhjemme og sender dem til laboratoriet – men hvor hurtigt får man egentlig svar? 🤔

Ifølge de europæiske PKU-retningslinjer skal laboratoriet give prøvesvar senest 2 hverdage efter, de har modtaget blodprøven. ⏱️

Mange lande inkl. Danmark, Norge og Sverige, sender blodprøverne med posten. De skal sendes i god tid for at de kan nå at komme frem til laboratoriet. I Danmark betyder det, at den skal sendes senest mandag for at være på Rigshospitalet onsdag, så de kan have den på laboratoriet torsdag morgen.
Der opstår dog udfordringer med posten, hvilket vi både oplevede med PostNord og nu også med DAO. Så ikke altid når blodprøven frem i tide.

I PKU Foreningen for Danmark arbejder vi også for at optimere ovenstående - det sker blandt andet ved at have møder med DAO og klinik for PKU.
Vi håber dog, at der i nær fremtid bliver mulighed for at hjemmeteste, så man kan få svar med det samme!

Sammen kan vi sikre, at alle får hurtige og brugbare resultater. 🤝

Læs hele opslaget fra ESPKU nedenfor.

🧬 PKU Community – Why Getting Phe Results Quickly Matters.

For people living with PKU, checking phenylalanine (Phe) levels regularly is a very important part of staying healthy. Many families take a small blood sample at home and send it to the laboratory by post. After that, the lab measures the Phe level and sends back the result.

According to the European PKU Guidelines, once the laboratory receives the sample, the result should be reported within a maximum of 2 working days. ⏱️

Why is this so important?
👶 For children keeping Phe levels in range supports healthy brain development.
🤰 For women during pregnancy quick results help doctors and families react immediately if levels change.
👨‍👩‍👧 For all patients and families getting results quickly makes it easier to adjust the diet and stay motivated with regular testing.

Unfortunately, in some countries patients and families receive their results much later than recommended. When results come with a long delay, it becomes harder to react in time and manage PKU effectively.

💡 Sometimes laboratories analyze samples only once per week. In these cases, PKU teams may suggest sending samples on specific days so they arrive in time for testing.

Fast results = better control, better decisions, and more peace of mind. 🙂

📣 If you or your child live with PKU, don’t hesitate to ask your clinic or PKU team about the turnaround time for Phe results. The recommended standard is no more than 2 working days after the lab receives the sample.

Together, patients, families, doctors, and laboratories can help ensure that everyone receives results as quickly as possible. 🤝

08/03/2026

🌸 International Women’s Day in the PKU Community 🌸

Today we celebrate all the incredible women in the PKU community. Women living with PKU, mothers, sisters, daughters, caregivers, advocates, and friends.

Every day, women in our community show extraordinary strength and persistence. Managing PKU is not a small task. It requires planning, discipline, and constant attention. And yet so many women do this while also taking care of their families, supporting others, working, studying, and following their passions.

Women with PKU prove every day that it is possible to live a full, meaningful life with the condition. With the right care, support, and access to treatment, women with PKU can truly thrive and build the lives they dream of.

At the same time, PKU in women has some unique aspects that science is still working to understand better. Research has shown, for example, that phenylalanine levels may fluctuate during the menstrual cycle, which suggests that hormonal changes can influence metabolism. Pregnancy is another important area, where maintaining metabolic control is essential for the health of the baby.

However, many important questions remain especially about how PKU interacts with hormonal changes later in life, such as perimenopause and menopause. This is why research focused on women’s health in PKU is so important. The more we learn, the better care and support women with PKU can receive throughout their entire lives.
🌍

At the same time, every woman with PKU deserves access to the best possible care at every stage of life. Whether a woman with PKU is planning a pregnancy, already pregnant, or not considering pregnancy at all, she should have access to high-quality medical care, proper monitoring, and the full range of available treatment options. Women with PKU deserve support that respects their individual life choices and health needs.

Today we also want to recognize something equally powerful: women supporting women. 🤝

In the PKU community, women often stand beside each other sharing experiences, giving advice, encouraging each other through difficult moments, and celebrating successes together.

Many women are also the driving force behind patient organizations, local support groups, and online communities, helping families navigate life with PKU and making sure no one feels alone.

💪 Thank you for your strength.
💚 Thank you for your persistence.
🌷 Thank you for everything you do — for yourselves, for your families, and for the PKU community.

Happy International Women’s Day to all the amazing women in our PKU family. 💐

05/03/2026

🌍 Youth People’s Forum er skudt i gang!
Norge og Sverige har allerede repræsentanter med – men Danmark mangler stadig nogen på holdet 💚
Det første online møde er netop blevet afholdt, og næste gang mødes deltagerne fysisk. Der er allerede skabt et fantastisk sammenhold blandt de unge, som brænder for at dele erfaringer, idéer og oplevelser på tværs af landene.
👉 Er du mellem 18 og 30 år og vil du være en del af noget helt særligt?
Så kan du stadig nå at komme med!
Skriv en kommentar herunder eller send en mail til [email protected], hvis du er nysgerrig eller vil høre mere.

05/03/2026

🇩🇰🤝🇸🇪🇳🇴 Skandinavisk PKU-samarbejde
Vi deltog for nylig i et møde mellem de skandinaviske PKU-foreninger, arrangeret af PTC Therapeutics 💬
Fokus var på compliance, samarbejde med foreningslivet, E.S.PKU, planering af diæten og efterlevelse af de europæiske guidelines og der var bred enighed:
🔹 De europæiske retningslinjer bliver endnu ikke fulgt helt i vores lande
🔹 Vi har brug for hjemmetester, så vi ikke skal vente så længe på blodprøvesvar
🔹 Overgangen fra barn til voksen skal styrkes i både DK, NO og SE
🔹 Psykologisk støtte bør være en naturlig del af PKU-behandlingen
Det var inspirerende at udveksle erfaringer – sammen står vi stærkere for bedre PKU-behandling i Norden 💚

04/03/2026

🦷Dental Care in PKU – Why It Matters at Every Age

Good dental health is essential for everyone but in PKU, it’s especially important. Dental caries (tooth decay) can cause pain and infection, which may lead to an increase in blood phenylalanine (Phe) levels. And as we know, keeping Phe in range is key for long-term health.

What do we know from research?
Studies in children with PKU show:
🔹 More dental caries in primary (baby) teeth
🔹 Higher levels of acid erosion
🔹 Higher “decayed, missing and filled surfaces” (DMFS) index compared to children without PKU
🔹 A higher prevalence of enamel developmental defects (also seen in some other inherited metabolic disorders).

Importantly, PKU itself does not directly damage teeth. The increased risk seems to be related to: 🍞 Frequent carbohydrate intake
🥤 Acidic protein substitutes
🪥 Irregular tooth brushing
🧵 Low use of interdental cleaning (floss, brushes)
🗓️ Irregular dental check-ups
❗ A high number of untreated cavities

Why is this happening?
In PKU, dietary management often includes:
✔️ Frequent meals/snacks
✔️ Special low-protein products
✔️ Protein substitutes (which can be acidic)

When teeth are frequently exposed to carbohydrates and acidic drinks, the risk of:
🦠 Dental caries
🦷 Enamel erosion
🩸 Gum disease increases especially if oral hygiene is inconsistent.

✅ What Can You Do? (Practical Tips)
💧 Rinse your mouth with water after taking protein substitute (to prevent it sticking to teeth)
⏱️ Take protein substitute relatively quickly instead of sipping for a long time
🍬 Limit sweet foods and drinks to mealtimes
🍼 Avoid infant feeding bottles after 1 year of age
🪥 Brush teeth at least twice daily with fluoride toothpaste
🧵 Use floss or interdental brushes regularly
🗓️ Schedule regular dental check-ups (even if there are no symptoms!)

👨‍👩‍👧 For Parents
Start prevention early! Baby teeth matter, they affect eating, speech, and the health of permanent teeth. Building good habits from childhood makes a lifelong difference.

👩‍🦰👨 For Adults with PKU
Dental health is just as important in adulthood even though most studies focus on children. Untreated dental infections can affect overall health and metabolic control.

🦷 Healthy teeth = better comfort, fewer infections, and better metabolic stability.

02/03/2026

https://sjaeldnediagnoser.dk/nyheder/vil-du-fortaelle-en-kandidat-om-livet-med-en-sjaelden-diagnose/?fbclid=IwZnRzaAQSv1RleHRuA2FlbQExAHNydGMGYXBwX2lkCjY2Mjg1NjgzNzkAAR7zVYE9XRIGXg_MeYw2dj4LU9Dx1z6b4yMYKZWikgbDTmwKP-jsCmT5A5cNyg_aem_zSHiMZxMNprnmXeVelLmqQ

Kender du en politiker, der bør møde en sjælden borger? I Sjældne Diagnoser vil vi gerne sikre os, at de også husker de sjældne stemmer i debatten. Vil du være med?

28/02/2026

I dag er – en dag, der rammer lige i hjertet for os i PKU-familien.
PKU startede for os med det skæbnesvære opkald efter hæleprøven. Det var ikke en diæt, vi valgte, men en livslang nødvendighed: streng proteinbegrænsning, specielle formler og lavprotein-mad for at beskytte hjernen – resten af livet.
Vi mangler stadig viden om voksne og ældre med PKU, ligesom påpeger. Uden bedre omsorg risikerer vi komplikationer og større omkostninger for alle.
Lad os dele og kæmpe sammen for livslang støtte! LIKE 👍 og DEL 🔄

25/02/2026

🇪🇺 I maj 2025 blev de nyeste europæiske retningslinjer for PKU officielt offentliggjort med opdaterede anbefalinger og standarder for behandling i hele Europa.
📌 Anbefaling 53:
”Personer med PKU bør opmuntres til at deltage i motion og sport samt sikre tilstrækkeligt energi- og næringsindtag for optimal præstation.”
💪 Budskabet er klart – motion er både sikker og gavnlig for personer med PKU!
🏃‍♀️ Fysisk aktivitet og PKU – vigtige pointer:
✔️ Moderat motion øger ikke Phe-niveauet nævneværdigt
✔️ Regelmæssig aktivitet styrker hjerte, muskler, knogler og mentalt velbefindende
✔️ Tilstrækkelig energi og korrekt brug af proteinerstatning er afgørende
✔️ God metabolisk kontrol giver bedre præstation
🌟 Personer med PKU bør leve et aktivt og sundt liv – ligesom alle andre! ⛹️‍♂️🏋‍♀️🚴‍♂️💃
📖 Vi opfordrer alle patienter, familier og sundhedsprofessionelle til at læse de fulde europæiske PKU-retningslinjer for at få indsigt i de nyeste anbefalinger og standarder for behandling:

https://www.sciencedirect.com/science/article/pii/S1096719225001167?ref=pdf_download&fr=RR-9&rr=9d362c20cbdcdd0e

25/02/2026

Glæd dig – det er i aften kl. 19:30-21:30, at vi har besøg af Inge Louv live, som vil gøre os klogere på emnet “fra merudgift til kompensationsydelse”. 💡
Har du endnu ikke tilmeldt dig? Så skynd dig at gøre det via linket herunder – du modtager selvfølgelig mødelinket på mail. ✅
Arrangementet er for medlemmer af PKU Foreningen.
Er du endnu ikke medlem, men vil gerne deltage i dette eller kommende arrangementer – og samtidig støtte vores arbejde – så send en mail til [email protected], så hjælper vi dig godt i gang. 💚 medlemskabet koster kun 200kr om året for en hel husstand 🏡😎