Małgorzata Henek
@malhen.bsky.social
Board member of European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria, social services specialist, patient advocate. ♥️: 📖🚗✈️🎶📺
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:
espku@espku.org
This vital document explains your PKU needs. Get yours via your national PKU association!
Used it? Share your experience with E.S.PKU:
espku@espku.org
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:
espku@espku.org
This vital document explains your PKU needs. Get yours via your national PKU association!
Used it? Share your experience with E.S.PKU:
espku@espku.org
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? 🤔🧐
We take so many things for granted and it would never cross our minds that that something would stop being available. Newborn screening safes lifes and changes it for the better. I stand with the USA PKU Community and hope things will be better soon.
We stand with the PKU community in the U.S.
Newborn screening saves lives — it must be well-organized, well-funded, and available to every newborn.
🧬 Screen for as many conditions as science allows
⚖️ It’s not a privilege — it’s a human right.
Newborn screening saves lives — it must be well-organized, well-funded, and available to every newborn.
🧬 Screen for as many conditions as science allows
⚖️ It’s not a privilege — it’s a human right.
April 16, 2025 at 5:58 PM
We take so many things for granted and it would never cross our minds that that something would stop being available. Newborn screening safes lifes and changes it for the better. I stand with the USA PKU Community and hope things will be better soon.
The quality of care of adults with PKU is different from the quality of care of children with PKU. The quality of care of adults with PKU varies throughout Europe. Adult life with PKU has its challenges and we need adults to tell us about them and raise #adultpkuawareness
📣 Last year's 'The Life of adults with PKU' campaign highlighted adult PKU life. Now, adults, share your REALITIES! Describe diet struggles, healthcare issues, social limits & ACHIEVEMENTS! 🧐 Use #adultpkuawareness to demand equal care! Your stories matter! 💪
April 16, 2025 at 5:54 PM
The quality of care of adults with PKU is different from the quality of care of children with PKU. The quality of care of adults with PKU varies throughout Europe. Adult life with PKU has its challenges and we need adults to tell us about them and raise #adultpkuawareness
Congratulations Kirsten‼️👏🥳 It's wonderful that you're part of our community‼️Your dedication is inspiring and you're wonderful human being‼️😘
Today we are celebrating Dr. Kirsten Kiær Ahring 25 years of professional dedication! 👏 Her impact on the #PKU community is invaluable. Thank you!
April 1, 2025 at 4:55 PM
Congratulations Kirsten‼️👏🥳 It's wonderful that you're part of our community‼️Your dedication is inspiring and you're wonderful human being‼️😘
Yesterday's meeting for adults with #PKU in Cracow was great! Interesting lectures by our doctor and dietitian and cooking PKU versions of Polish Easter dishes proved it can be easy, joyful and tasty! #adultPKUawareness
March 30, 2025 at 8:30 PM
Yesterday's meeting for adults with #PKU in Cracow was great! Interesting lectures by our doctor and dietitian and cooking PKU versions of Polish Easter dishes proved it can be easy, joyful and tasty! #adultPKUawareness
If you haven't filled out EU survey on #rarediseases do it now! Deadline is 31st March 2025
📢 Rare Diseases EU Survey! 🧬 Your input is crucial!
✅ Patients, healthcare pros, researchers, policymakers & all in the rare disease space, participate!
➡️ Shape EU policy!
📅 Deadline: March 2025
🔗 ec.europa.eu/eusurvey/run...
#RareDiseases #EUSurvey #PublicHealth
✅ Patients, healthcare pros, researchers, policymakers & all in the rare disease space, participate!
➡️ Shape EU policy!
📅 Deadline: March 2025
🔗 ec.europa.eu/eusurvey/run...
#RareDiseases #EUSurvey #PublicHealth
March 29, 2025 at 3:59 PM
If you haven't filled out EU survey on #rarediseases do it now! Deadline is 31st March 2025
Reposted by Małgorzata Henek
📅 March 29, Kraków – 1st ever #PKU meeting just for adults!
What’s planned?
🔹 PKU doctor & dietitian lectures 🏥
🔹 Easter cooking workshop 🍽️
👨⚕️ Organized by: The Adult Metabolic Clinic of the University Hospital in Kraków & Vitalfo. #adultpkuawaremess
What’s planned?
🔹 PKU doctor & dietitian lectures 🏥
🔹 Easter cooking workshop 🍽️
👨⚕️ Organized by: The Adult Metabolic Clinic of the University Hospital in Kraków & Vitalfo. #adultpkuawaremess
March 19, 2025 at 3:53 PM
📅 March 29, Kraków – 1st ever #PKU meeting just for adults!
What’s planned?
🔹 PKU doctor & dietitian lectures 🏥
🔹 Easter cooking workshop 🍽️
👨⚕️ Organized by: The Adult Metabolic Clinic of the University Hospital in Kraków & Vitalfo. #adultpkuawaremess
What’s planned?
🔹 PKU doctor & dietitian lectures 🏥
🔹 Easter cooking workshop 🍽️
👨⚕️ Organized by: The Adult Metabolic Clinic of the University Hospital in Kraków & Vitalfo. #adultpkuawaremess