International PKU Day
@pkuday.org
International PKU Day was established and is led by the E.S.PKU to celebrate the legacy of Horst Bickel and Robert Guthrie as well as to raise awareness of Phenylketonuria.
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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 International PKU Day
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
Reposted by International PKU Day
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 International PKU Day
Our #shadesofpku campaign is wrapping up! We've highlighted #unmetmedicalneed in PKU, from food access to adult care. Your engagement on #shadesofpku made a huge impact. Thank you for raising your voices! #IPKUDAY2025
June 30, 2025 at 7:04 AM
Our #shadesofpku campaign is wrapping up! We've highlighted #unmetmedicalneed in PKU, from food access to adult care. Your engagement on #shadesofpku made a huge impact. Thank you for raising your voices! #IPKUDAY2025
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Today, for #shadesofpku & #IPKUDAY2025, we celebrate the immense power of the PKU Community! 💪 It's where patients & families find unwavering support & understanding. We unite to raise PKU awareness. It`s one of the lightest shades of PKU.
June 29, 2025 at 10:21 AM
Today, for #shadesofpku & #IPKUDAY2025, we celebrate the immense power of the PKU Community! 💪 It's where patients & families find unwavering support & understanding. We unite to raise PKU awareness. It`s one of the lightest shades of PKU.
Thank you for celebrating #IPKUDAY2025 🙂 We love seeing the PKU Community coming together to celebrate and raise awareness.
Thank you to patients, families, organizations 🤝, professionals 👩⚕️👨⚕️, and companies 💊 and their employees for making #IPKUDAY2025 special! Your engagement showed the shades of PKU. Together, we're raising awareness and making a difference! 💪
June 29, 2025 at 6:15 AM
Thank you for celebrating #IPKUDAY2025 🙂 We love seeing the PKU Community coming together to celebrate and raise awareness.
Reposted by International PKU Day
28th June and I’m thinking today of the massive advances made in the treatment of PKU in Ireland over the last 50+ years. But also I’m thinking of those parts of the world where people are unable to access proper treatment and are without automatic screening at birth.
#ipkuday2025 #phenylketonuria
#ipkuday2025 #phenylketonuria
June 28, 2025 at 2:33 PM
28th June and I’m thinking today of the massive advances made in the treatment of PKU in Ireland over the last 50+ years. But also I’m thinking of those parts of the world where people are unable to access proper treatment and are without automatic screening at birth.
#ipkuday2025 #phenylketonuria
#ipkuday2025 #phenylketonuria
Reposted by International PKU Day
Happy International PKU Day! “Hope is a waking dream.” – Aristotle / Access to care is something to work on + hope for in order to realize our shared, waking dream. For many of us + families like mine with #PKU. Read my column to mark the day here -> jjbrownauthor.com/internationa... #IPKUDay2025
J.J.Brown Author - International PKU Day 2025: Hopes and Dreams With PKU in the Family
“Hope is a waking dream.” – Aristotle International PKU Day 2025, I’m reflecting how my hopes and dreams for what follows after a healthcare system reports the baby is “not OK”, …
jjbrownauthor.com
June 28, 2025 at 8:56 PM
Happy International PKU Day! “Hope is a waking dream.” – Aristotle / Access to care is something to work on + hope for in order to realize our shared, waking dream. For many of us + families like mine with #PKU. Read my column to mark the day here -> jjbrownauthor.com/internationa... #IPKUDay2025
Happy International PKU Day! 🌍Add #IPKUDAY2025 and show us how you are celebrating. 🥳
Read @espku.org statement about how patients and families drive their advocacy actions:
www.espku.org/2025/06/28/s...
Read @espku.org statement about how patients and families drive their advocacy actions:
www.espku.org/2025/06/28/s...
June 28, 2025 at 6:16 AM
Happy International PKU Day! 🌍Add #IPKUDAY2025 and show us how you are celebrating. 🥳
Read @espku.org statement about how patients and families drive their advocacy actions:
www.espku.org/2025/06/28/s...
Read @espku.org statement about how patients and families drive their advocacy actions:
www.espku.org/2025/06/28/s...
Reposted by International PKU Day
We're amplifying the call for more research on adults with PKU! Their experiences and health status need to be better understood.
As part of our #shadesofpku campaign for #IPKUDAY2025, we're raising #adultpkuawareness. Let's push for studies that truly reflect adult life with PKU.
As part of our #shadesofpku campaign for #IPKUDAY2025, we're raising #adultpkuawareness. Let's push for studies that truly reflect adult life with PKU.
June 27, 2025 at 7:07 AM
We're amplifying the call for more research on adults with PKU! Their experiences and health status need to be better understood.
As part of our #shadesofpku campaign for #IPKUDAY2025, we're raising #adultpkuawareness. Let's push for studies that truly reflect adult life with PKU.
As part of our #shadesofpku campaign for #IPKUDAY2025, we're raising #adultpkuawareness. Let's push for studies that truly reflect adult life with PKU.
Reposted by International PKU Day
Two Days Left! Nominate a candidate for the Sheila Jones Award! 🏆 🗝️
This is a fantastic opportunity to honor an unpaid individual, group, or patient organization that has made a significant difference.
Go to:
➡️ espku.org/sheila-jones...
This is a fantastic opportunity to honor an unpaid individual, group, or patient organization that has made a significant difference.
Go to:
➡️ espku.org/sheila-jones...
June 27, 2025 at 7:05 AM
Two Days Left! Nominate a candidate for the Sheila Jones Award! 🏆 🗝️
This is a fantastic opportunity to honor an unpaid individual, group, or patient organization that has made a significant difference.
Go to:
➡️ espku.org/sheila-jones...
This is a fantastic opportunity to honor an unpaid individual, group, or patient organization that has made a significant difference.
Go to:
➡️ espku.org/sheila-jones...
Reposted by International PKU Day
Today during our #shadesofpku campaign for #IPKUDAY2025 we highlight the inequality in access to various methods of therapy for adults with PKU. 🧐 We emphasize that adults should have access to all methods of therapy including the newest pharmaceutical options. 💊
June 26, 2025 at 7:20 AM
Today during our #shadesofpku campaign for #IPKUDAY2025 we highlight the inequality in access to various methods of therapy for adults with PKU. 🧐 We emphasize that adults should have access to all methods of therapy including the newest pharmaceutical options. 💊
PKU acossiaton in Ireland 🇮🇪 is organising an online meeting in celebration of this year's International PKU Day! #IPKUDAY2025 Details below👇
June 25, 2025 at 7:32 AM
PKU acossiaton in Ireland 🇮🇪 is organising an online meeting in celebration of this year's International PKU Day! #IPKUDAY2025 Details below👇
Reposted by International PKU Day
#IPKUDAY2025 #shadesofpku highlights crucial PKU healthcare transition. EU Guidelines Rec. 25 demands specialized adult care. This #pkuunmetmedicalneed means planned, patient-collaborative transitions are key to avoid lost follow-up. We urge adherence for patient quality of life.
June 24, 2025 at 7:29 AM
#IPKUDAY2025 #shadesofpku highlights crucial PKU healthcare transition. EU Guidelines Rec. 25 demands specialized adult care. This #pkuunmetmedicalneed means planned, patient-collaborative transitions are key to avoid lost follow-up. We urge adherence for patient quality of life.
Reposted by International PKU Day
🚨 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 International PKU Day
Today during #shadesofpku organised on the occasion of #IPKUDAY2025 we highlight the need for new doctors to choose #PKU as their career path. It offers research possibilities, opportunity to shape standards of care and being a leader in a care for patients with a rare disease.
June 20, 2025 at 7:22 AM
Today during #shadesofpku organised on the occasion of #IPKUDAY2025 we highlight the need for new doctors to choose #PKU as their career path. It offers research possibilities, opportunity to shape standards of care and being a leader in a care for patients with a rare disease.
Reposted by International PKU Day
On this day of #shadesofpku campaign leading to #IPKUDAY2025 we shine a light on unequal access to pharmaceutical treatments options. This is frustrating for patients.
June 18, 2025 at 8:41 AM
On this day of #shadesofpku campaign leading to #IPKUDAY2025 we shine a light on unequal access to pharmaceutical treatments options. This is frustrating for patients.
Reposted by International PKU Day
📅 Less than 2 weeks to #InternationalPKUDay! 🌍
Use the official hashtag #IPKUDAY2025 & logo in your posts!
🎨 Download the logo: www.pku.at/ijd0jw
We want to see your support – patients, doctors, orgs & pharma pros! 💪
Use the official hashtag #IPKUDAY2025 & logo in your posts!
🎨 Download the logo: www.pku.at/ijd0jw
We want to see your support – patients, doctors, orgs & pharma pros! 💪
June 17, 2025 at 7:29 AM
📅 Less than 2 weeks to #InternationalPKUDay! 🌍
Use the official hashtag #IPKUDAY2025 & logo in your posts!
🎨 Download the logo: www.pku.at/ijd0jw
We want to see your support – patients, doctors, orgs & pharma pros! 💪
Use the official hashtag #IPKUDAY2025 & logo in your posts!
🎨 Download the logo: www.pku.at/ijd0jw
We want to see your support – patients, doctors, orgs & pharma pros! 💪
Reposted by International PKU Day
📢 On #shadesofpku, we're highlighting the urgent need for good PHE monitoring. #IPKUDAY2025
European Guidelines: freq. of blood PHE tests (weekly for infants/pregnancy, monthly for adults), lab results back within 2 working days. Yet delays persist! It must change!
European Guidelines: freq. of blood PHE tests (weekly for infants/pregnancy, monthly for adults), lab results back within 2 working days. Yet delays persist! It must change!
June 16, 2025 at 8:45 AM
📢 On #shadesofpku, we're highlighting the urgent need for good PHE monitoring. #IPKUDAY2025
European Guidelines: freq. of blood PHE tests (weekly for infants/pregnancy, monthly for adults), lab results back within 2 working days. Yet delays persist! It must change!
European Guidelines: freq. of blood PHE tests (weekly for infants/pregnancy, monthly for adults), lab results back within 2 working days. Yet delays persist! It must change!
Nominate your candidate for this unique award. It can be a person, group of people or a patient organisation. Deadline is #IPKUDAY2025
⌛There are just 2 weeks left to nominate a candidate for Sheila Jones Award. Last year Kate Learoyd and Caroline Graham received it for their efforts and advocacy to reimburse Sapropterin in the UK.
✍️ Nominate your candidate for this unique award: 🔗 www.espku.org/sheila-jones...
✍️ Nominate your candidate for this unique award: 🔗 www.espku.org/sheila-jones...
June 14, 2025 at 7:19 AM
Nominate your candidate for this unique award. It can be a person, group of people or a patient organisation. Deadline is #IPKUDAY2025
Reposted by International PKU Day
The PKU Association from the Czech Republic has been fighting for the reimbursement of low-protein food for over a decade. Click the link below and read the statement issued on the occasion of #IPKUDAY2025. These are #shadesofpku and #unmetmedicalnneds
linkedin.com/posts/espku_...
linkedin.com/posts/espku_...
As part of the Shades of PKU #shadesofpku campaign for International PKU Day #IPKUDAY2025, we are sharing a statement from the Czech PKU Association that has been tirelessly advocating for over a… | ...
As part of the Shades of PKU #shadesofpku campaign for International PKU Day #IPKUDAY2025, we are sharing a statement from the Czech PKU Association that has been tirelessly advocating for over a dec...
linkedin.com
June 12, 2025 at 7:18 AM
The PKU Association from the Czech Republic has been fighting for the reimbursement of low-protein food for over a decade. Click the link below and read the statement issued on the occasion of #IPKUDAY2025. These are #shadesofpku and #unmetmedicalnneds
linkedin.com/posts/espku_...
linkedin.com/posts/espku_...
Reposted by International PKU Day
📅 Day 4 of #shadesofpku for #IPKUDAY2025
We urge every country to align with PKU care guidelines! 🌍
📣 “Gov’t should ensure reimbursement of special low protein foods & Phe-free/low Phe protein substitutes for all PKU patients.” – Rec. 54 #PKUEuropeanGuidelines #pkuunmetneed
We urge every country to align with PKU care guidelines! 🌍
📣 “Gov’t should ensure reimbursement of special low protein foods & Phe-free/low Phe protein substitutes for all PKU patients.” – Rec. 54 #PKUEuropeanGuidelines #pkuunmetneed
June 11, 2025 at 7:08 AM
📅 Day 4 of #shadesofpku for #IPKUDAY2025
We urge every country to align with PKU care guidelines! 🌍
📣 “Gov’t should ensure reimbursement of special low protein foods & Phe-free/low Phe protein substitutes for all PKU patients.” – Rec. 54 #PKUEuropeanGuidelines #pkuunmetneed
We urge every country to align with PKU care guidelines! 🌍
📣 “Gov’t should ensure reimbursement of special low protein foods & Phe-free/low Phe protein substitutes for all PKU patients.” – Rec. 54 #PKUEuropeanGuidelines #pkuunmetneed
Reposted by International PKU Day
Mr Tobias Hagedorn,
@official_espku
Secretary, raised a point that the word 'diet' doesn't fully present what the therapy for PKU is. He suggested that we should use 'nutritional therapy.' On the 3rd day of the #shadesofpku campaign for #IPKUDAY2025 we ask you what do you think?
@official_espku
Secretary, raised a point that the word 'diet' doesn't fully present what the therapy for PKU is. He suggested that we should use 'nutritional therapy.' On the 3rd day of the #shadesofpku campaign for #IPKUDAY2025 we ask you what do you think?
June 10, 2025 at 6:01 AM
Mr Tobias Hagedorn,
@official_espku
Secretary, raised a point that the word 'diet' doesn't fully present what the therapy for PKU is. He suggested that we should use 'nutritional therapy.' On the 3rd day of the #shadesofpku campaign for #IPKUDAY2025 we ask you what do you think?
@official_espku
Secretary, raised a point that the word 'diet' doesn't fully present what the therapy for PKU is. He suggested that we should use 'nutritional therapy.' On the 3rd day of the #shadesofpku campaign for #IPKUDAY2025 we ask you what do you think?
Reposted by International PKU Day
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 International PKU Day
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.