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malhen.bsky.social
Board member of European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria, social services specialist, patient advocate. ♥️: 📖🚗✈️🎶📺
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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_...

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.

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.

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.

I'm looking forward to working with Lars!

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?...

📢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...

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.

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‼️😘

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

📅 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 a brilliant interview! If you missed it find a time to watch it. It's soo worth it! #pkulifestories

The interview with Tobias Hagedorn premieres tonight! Set a reminder as you can't miss it! #pkulifestories

New interview filmed for the #pkulifestories premieres on Wednesday evening. You can't miss it! Go to the link below, set up notification and see you on Wednesday at 20:30 CET.

EU Parliament is reviewing many regulations including those relating to the rare diseases. Their final shape will influence the lives of ppl with #PKU that's why it's so important for the entire PKU community to participate in this survey! Be heard! Fill this survey now!

Today I've had my first visit at the adult #PKU clinic. The professionalism and enthusiasm of doctor and dietician is very refreshing. I've had comprehensive tests so I know the condition of my body and whether I should take any additional supplements. #adultpkuawareness

The nominations for this year's Sheila Jones Award are open. Don't be afraid to nominate a candidate. Go to the dedicated link which you'll find below, submit a nomination and tell us this person's story.

Dear Volodymyr Zelenskyy, dear Ukrainian friends, you are not alone.

Happy Rare Disease Day! 💜 Wszystkiego najlepszego w Dniu Chorób Rzadkich! 💜 W Polsce z chorobami rzadkimi zmaga się dwa miliony ludzi. Należy zapewnić im jak najlepszą opiekę medyczną, dostęp do najnowszych metod leczenia oraz wsparcie finansowe oraz społeczne i wytchnieniowe.

He'd be 38 years old today....😞 It's such a hard day. He left, we've stayed....

Panie i Panowie! To jest najprawdziwszy rarytas #PKU I am sure I am not alone when I say this that I would love to be able to listen to those tapes! Wow! Just wow! @espku.org

When I was little 'Adventures of the Gummi Bears' was popular in PL & they had a Gummiberry Juice thx to which could jump very high. Some parents use similar story to explain why kids with #PKU have to drink a special Formula. #pkulifestories

It's visible how the approach to the children has changed over 30 years. Every child is different and their parents need to adjust the way they communicate certain things especially if that child suffers from a rare disease that requires strict medical nutrition therapy. #pkulifestories

Propaganda rosyjska wydaje się być esencją portalu X. Obrzydliwe zakłamywanie faktów jest tam tak agresywnie serwowane, że gdy je kwestionujesz, a jesteś kobietą i na dodatek wylewa się na Ciebie taka ogromna fala hejtu masz dość. Naprawdę mam inne ważniejsze rzeczy z którymi muszę sobie poradzić.

That's how everyone's PKU journey begins. It changes lifes, family's dynamics. #pkustoriesfamily

Interview with Andrea premieres tonight at 8:15 pm CET. You don't want to miss it. #pkulifestories

When peers teased Florentina about her Formula she said 'take a sip' + explained what Phenylketonuria is and that helped. It didn't work in my case, but it's a different and more complicated story I am not ready to share it just yet. #pkulifestories

I know Florentina's mum. She's wonderful! The wisdom shines though the advice she have her daughter on how she should perceive her #PKU #pkulifestories

This is a Call to all professionals working in the field of #PKU, students who work in their PhD and work in the field of PKU. Submit your abstract for a chance to present it during the oral presentation at the E.S.PKU professional meeting, on Friday, 26th September 2025.

Dzisiaj rozpoczynają się #InvictusGames2025 w których po raz kolejny uczestniczy również drużyna polskich weteranów, za którą mocno trzymam kciuki! Więcej o nich przeczytacie na oficjalnej stronie Igrzysk, których założycielem jest Książę Harry www.invictusgamesfoundation.org/invictus-com...

#InvictusGames2025 begins today! I am holding my fingers crossed for #TeamPoland!

My late brother had Phenylketonuria and was battling pancreatic cancer so I have experienced what his #PKU care looked like. He was treated because of his PKU at Children's Hospital. We must think of improving PKU care when a patient has cancer.

I was very surprised to read on Bluesky today that the @espku.org should align to something. E.S.PKU is an independent organisation working with many experts in the field of Phenylketonuria. Suggesting that E.S.PKU should align to anyone and anything is inappropriate.

It's been 2 months since my brother's passing. Today was a bad day for me.

This is the official Bluesky account for the International PKU Day. Follow this account not to miss anything related to International PKU Day. It's the first place to find news regarding this special day for the entire PKU community.