Małgorzata Henek
@malhen.bsky.social
Secretary of The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria, social services specialist, patient advocate. ♥️: 📖🚗✈️🎶📺
We call adults with PKU from all over the world to fill this questionnaire. The research aims to anwer a question what's really like to live a life with PKU as an adult. There are no wrong answers! Anwer questions honestly.
📢 Calling adults with PKU worldwide! If you are 16+ and living with PKU, please take part in an important questionnaire about adult life with PKU.
pku.at/vewzjt
Please share! 🔄
#PKU #adultpkuawareness #raredisease
pku.at/vewzjt
Please share! 🔄
#PKU #adultpkuawareness #raredisease
May 23, 2026 at 12:21 PM
We call adults with PKU from all over the world to fill this questionnaire. The research aims to anwer a question what's really like to live a life with PKU as an adult. There are no wrong answers! Anwer questions honestly.
Reposted by Małgorzata Henek
📢 Mental health is part of PKU care.
The new European PKU Guidelines say emotional wellbeing should be discussed at every clinic visit. Don’t be afraid to talk about stress, anxiety or daily challenges. Your voice matters.
#PKU #MentalHealth #RareDisease
The new European PKU Guidelines say emotional wellbeing should be discussed at every clinic visit. Don’t be afraid to talk about stress, anxiety or daily challenges. Your voice matters.
#PKU #MentalHealth #RareDisease
May 9, 2026 at 6:09 PM
📢 Mental health is part of PKU care.
The new European PKU Guidelines say emotional wellbeing should be discussed at every clinic visit. Don’t be afraid to talk about stress, anxiety or daily challenges. Your voice matters.
#PKU #MentalHealth #RareDisease
The new European PKU Guidelines say emotional wellbeing should be discussed at every clinic visit. Don’t be afraid to talk about stress, anxiety or daily challenges. Your voice matters.
#PKU #MentalHealth #RareDisease
Reposted by Małgorzata Henek
📢 Today we announce the tittle and theme of this year’s International PKU Day campaign:
🧩 “Traces of PKU”
🧠 Theme: Mental Health
Join the conversation and learn more: espku.org/2026/05/04/i...
#IPKUDAY2026 #tracesofpku #pkumentalhealth
🧩 “Traces of PKU”
🧠 Theme: Mental Health
Join the conversation and learn more: espku.org/2026/05/04/i...
#IPKUDAY2026 #tracesofpku #pkumentalhealth
May 4, 2026 at 11:00 AM
📢 Today we announce the tittle and theme of this year’s International PKU Day campaign:
🧩 “Traces of PKU”
🧠 Theme: Mental Health
Join the conversation and learn more: espku.org/2026/05/04/i...
#IPKUDAY2026 #tracesofpku #pkumentalhealth
🧩 “Traces of PKU”
🧠 Theme: Mental Health
Join the conversation and learn more: espku.org/2026/05/04/i...
#IPKUDAY2026 #tracesofpku #pkumentalhealth
Reposted by Małgorzata Henek
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...
espku.org/sheila-jones...
February 28, 2026 at 8:26 PM
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...
espku.org/sheila-jones...
Reposted by Małgorzata Henek
🌍 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!
✔️ 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!
March 16, 2026 at 9:29 AM
🌍 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!
✔️ 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!
Help us transform patients experiences into scientific evidence. If you have #PKU or are parent or carers of person with PKU fill this survey.
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
Anonymous survey now open.
👤 Adults 16+
👨👩👧 Parents/carers
🌍 Anywhere in the world
⏱ ~20 min | 🔒 Voluntary
Have your say: www.pku.at/hkagzo
March 19, 2026 at 12:08 PM
Help us transform patients experiences into scientific evidence. If you have #PKU or are parent or carers of person with PKU fill this survey.
Wszystkiego dobrego w Nowym Roku 2026! 🎉 Niechaj będzie lepszy od poprzedniego!
January 1, 2026 at 2:29 PM
Wszystkiego dobrego w Nowym Roku 2026! 🎉 Niechaj będzie lepszy od poprzedniego!
Reposted by Małgorzata Henek
The 39th E.S.PKU Conference is officially sold out! For everyone who has sent an inquiry about the conference - if you haven't received a response, you will hear from us shortly ⏳. For those of you who have secured your spot at #ESPKUConference2025, see you in Hamburg! 🇩🇪
August 11, 2025 at 7:13 AM
The 39th E.S.PKU Conference is officially sold out! For everyone who has sent an inquiry about the conference - if you haven't received a response, you will hear from us shortly ⏳. For those of you who have secured your spot at #ESPKUConference2025, see you in Hamburg! 🇩🇪
Does the menstrual cycle influence PHE levels? 🤔 The newest research shows it does. #adultpkuawareness Female PKU is not only Maternal PKU Syndrome. 🔍 Read the research here: ojrd.biomedcentral.com/articles/10....
The influence of menstrual cycle on metabolic control and diet in patients with phenylketonuria - Orphanet Journal of Rare Diseases
Based on experiences from everyday clinical practice and indications from the literature, the menstrual cycle might impact on metabolic stability in patients with urea cycle disorders and organic acid...
ojrd.biomedcentral.com
July 27, 2025 at 7:38 AM
Does the menstrual cycle influence PHE levels? 🤔 The newest research shows it does. #adultpkuawareness Female PKU is not only Maternal PKU Syndrome. 🔍 Read the research here: ojrd.biomedcentral.com/articles/10....
Reposted by Małgorzata Henek
Ready for your summer adventures? ✈️ ☀️ Don't forget your E.S.PKU Metabolic Passport! 🌍
This vital document explains your PKU needs. Get yours via your national PKU association!
Used it? Share your experience with E.S.PKU:
[email protected]
This vital document explains your PKU needs. Get yours via your national PKU association!
Used it? Share your experience with E.S.PKU:
[email protected]
July 7, 2025 at 7:16 AM
Ready for your summer adventures? ✈️ ☀️ Don't forget your E.S.PKU Metabolic Passport! 🌍
This vital document explains your PKU needs. Get yours via your national PKU association!
Used it? Share your experience with E.S.PKU:
[email protected]
This vital document explains your PKU needs. Get yours via your national PKU association!
Used it? Share your experience with E.S.PKU:
[email protected]
Reposted by Małgorzata Henek
At this year's #ESPKUConference2025 the first revision of the European Guidelines on PKU diagnosis and treatment will be discussed!
Read it here: pku.at/i473xd 📖
You`ll have a unique chance to ask experts your questions! 🙋♀️🙋♂️ Read them to maximize the discussion.
Read it here: pku.at/i473xd 📖
You`ll have a unique chance to ask experts your questions! 🙋♀️🙋♂️ Read them to maximize the discussion.
July 17, 2025 at 7:31 AM
At this year's #ESPKUConference2025 the first revision of the European Guidelines on PKU diagnosis and treatment will be discussed!
Read it here: pku.at/i473xd 📖
You`ll have a unique chance to ask experts your questions! 🙋♀️🙋♂️ Read them to maximize the discussion.
Read it here: pku.at/i473xd 📖
You`ll have a unique chance to ask experts your questions! 🙋♀️🙋♂️ Read them to maximize the discussion.
Reposted by Małgorzata Henek
E.SPKU Conference 2025 hosted by DIG in Hamburg! 🇩🇪 This year, DIG celebrates its 50th anniversary! 🎉 The conference will be at the University Medical Center Hamburg-Eppendorf (UKE). More details coming soon! #ESPKUConference2025
July 15, 2025 at 7:06 AM
E.SPKU Conference 2025 hosted by DIG in Hamburg! 🇩🇪 This year, DIG celebrates its 50th anniversary! 🎉 The conference will be at the University Medical Center Hamburg-Eppendorf (UKE). More details coming soon! #ESPKUConference2025
Happy International PKU Day! #IPKUDAY2025 🌍🎉 Let's celebrate what we have. However PKU is not a solved problem. All European countries have gaps in care that need improvement. I recommend @espku.org
campaign #shadesofpku to see how life with PKU looks like in Europe.
campaign #shadesofpku to see how life with PKU looks like in Europe.
June 28, 2025 at 12:49 PM
Happy International PKU Day! #IPKUDAY2025 🌍🎉 Let's celebrate what we have. However PKU is not a solved problem. All European countries have gaps in care that need improvement. I recommend @espku.org
campaign #shadesofpku to see how life with PKU looks like in Europe.
campaign #shadesofpku to see how life with PKU looks like in Europe.
Reposted by Małgorzata Henek
🚨 Registration is NOW OPEN for the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) Conference 2025! 🚨
👉 Click here to register: espku.org/conferences/...
See you in Hamburg! 🇩🇪 #ESPKUConference2025 #ESPKU2025 #PKU
👉 Click here to register: espku.org/conferences/...
See you in Hamburg! 🇩🇪 #ESPKUConference2025 #ESPKU2025 #PKU
June 23, 2025 at 10:12 AM
🚨 Registration is NOW OPEN for the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) Conference 2025! 🚨
👉 Click here to register: espku.org/conferences/...
See you in Hamburg! 🇩🇪 #ESPKUConference2025 #ESPKU2025 #PKU
👉 Click here to register: espku.org/conferences/...
See you in Hamburg! 🇩🇪 #ESPKUConference2025 #ESPKU2025 #PKU
Reposted by Małgorzata Henek
One phone call, one diagnosis, and suddenly, the healthy child you just brought home from the hospital is facing a lifelong battle with a rare genetic disorder. Read Iza's story when her son was diagnosed with PKU. #shadesofpku #IPKUDAY2025
www.linkedin.com/posts/espku_...
www.linkedin.com/posts/espku_...
#shadesofpku #ipkuday2025 | European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria
Imagine your world crumbling in an instant. One phone call 📞, one diagnosis 🧬, and suddenly, the healthy child you just brought home is facing a lifelong battle. This was Iza's family reality when...
www.linkedin.com
June 8, 2025 at 3:52 PM
One phone call, one diagnosis, and suddenly, the healthy child you just brought home from the hospital is facing a lifelong battle with a rare genetic disorder. Read Iza's story when her son was diagnosed with PKU. #shadesofpku #IPKUDAY2025
www.linkedin.com/posts/espku_...
www.linkedin.com/posts/espku_...
Reposted by Małgorzata Henek
Day 2 of #shadesofpku for #IPKUDAY2025: A PKU diagnosis deeply impacts parents & siblings. Parents face anxiety; siblings' needs are often missed. Much inaccurate PKU info online! Act to correct it! Patient groups offer crucial support. All family members need psychological care.
June 5, 2025 at 8:14 AM
Day 2 of #shadesofpku for #IPKUDAY2025: A PKU diagnosis deeply impacts parents & siblings. Parents face anxiety; siblings' needs are often missed. Much inaccurate PKU info online! Act to correct it! Patient groups offer crucial support. All family members need psychological care.
Reposted by Małgorzata Henek
Day 1 of #shadesofpku: Newborn Screening! 👶🔬 Robert Guthrie developed the first #PKU blood test in 1960. Early detection prevents disability & saves costs. Not all European countries screen for PKU-this is an #pkuunmetmedicalneed. Screen all! Screen refugees up to age 6. #IPKUDAY2025
June 1, 2025 at 8:03 AM
Day 1 of #shadesofpku: Newborn Screening! 👶🔬 Robert Guthrie developed the first #PKU blood test in 1960. Early detection prevents disability & saves costs. Not all European countries screen for PKU-this is an #pkuunmetmedicalneed. Screen all! Screen refugees up to age 6. #IPKUDAY2025
This document is very important for people with PKU and for professionals taking care of PKUers. It also should be important for all decision makers regarding reimbursement of PKU formulas and low protein food.
📣 We are thrilled to announce that the first revision of the European Guidelines on diagnosis & treatment of Phenylketonuria has been punished. This updated resource is a major step forward for PKU care in Europe. 🇪🇺
➡️ Find the full guidelines here: sciencedirect.com/science/arti...
➡️ Find the full guidelines here: sciencedirect.com/science/arti...
European guidelines on diagnosis and treatment of phenylketonuria: First revision
Phenylketonuria (PKU) is an autosomal recessive inherited disorder of phenylalanine metabolism caused by deficiency of the enzyme phenylalanine hydrox…
sciencedirect.com
May 16, 2025 at 1:44 PM
This document is very important for people with PKU and for professionals taking care of PKUers. It also should be important for all decision makers regarding reimbursement of PKU formulas and low protein food.
So last weekend I was in the beautiful Eindhoven, Netherlands and #psveindhoven won! 👏 I've heard they really needed it and today I see they lead the Eredivisie! Congratulations! 👏 Hope they win it this season! 🤞
May 16, 2025 at 10:41 AM
So last weekend I was in the beautiful Eindhoven, Netherlands and #psveindhoven won! 👏 I've heard they really needed it and today I see they lead the Eredivisie! Congratulations! 👏 Hope they win it this season! 🤞
Taka refleksja w związku z kampanią wyborczą. Uważam, iż powinny być wymogi dla kandydatów na Prezydenta RP wykształcenie wyższe, znajomość języków obcych: język angielski obowiązkowo, wysoki poziom kultury osobistej, nie sprzyjanie obcym państwom.
May 16, 2025 at 10:39 AM
Taka refleksja w związku z kampanią wyborczą. Uważam, iż powinny być wymogi dla kandydatów na Prezydenta RP wykształcenie wyższe, znajomość języków obcych: język angielski obowiązkowo, wysoki poziom kultury osobistej, nie sprzyjanie obcym państwom.
I'm looking forward to working with Lars!
Welcome Lars Stollenwerk to the PKU MEP Alliance! (previously EU Cross-Party Alliance on PKU)! Together we’ll raise awareness, push policy, and support those living with PKU across Europe. 👩⚕️🧬🇪🇺 #PKUMEPALLIANCE
May 2, 2025 at 8:52 AM
I'm looking forward to working with Lars!
Reposted by Małgorzata Henek
PKU is often blamed for things it's not responsible for. In #pkulifestories Tobias Hagedorn clears up a one of these misconceptions 🎙️💡
Watch the full interview ▶️ youtu.be/cV1a5_mHyeY?...
Watch the full interview ▶️ youtu.be/cV1a5_mHyeY?...
April 30, 2025 at 8:18 AM
PKU is often blamed for things it's not responsible for. In #pkulifestories Tobias Hagedorn clears up a one of these misconceptions 🎙️💡
Watch the full interview ▶️ youtu.be/cV1a5_mHyeY?...
Watch the full interview ▶️ youtu.be/cV1a5_mHyeY?...
Reposted by Małgorzata Henek
📢On June 1st, 2025 on the occasion of #IPKUDAY2025 we'll launch of 'Shades of PKU' campaign! It'll show all shades of living with PKU + unmet needs of patients with PKU. #shadesofpku
Use #IPKUDAY logo in your publications: espku.org/projects/pku...
Use #IPKUDAY logo in your publications: espku.org/projects/pku...
April 28, 2025 at 10:06 AM
📢On June 1st, 2025 on the occasion of #IPKUDAY2025 we'll launch of 'Shades of PKU' campaign! It'll show all shades of living with PKU + unmet needs of patients with PKU. #shadesofpku
Use #IPKUDAY logo in your publications: espku.org/projects/pku...
Use #IPKUDAY logo in your publications: espku.org/projects/pku...
Any ideas on what's coming? 🤔🧐
April 22, 2025 at 3:32 PM
Any ideas on what's coming? 🤔🧐