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E.S.PKU

@espku.org

36 followers 14 following 150 posts

E.S.PKU - European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria in the umbrella organization of about 41 national and regional associations from 31 countries established by parents and/or patients.

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E.S.PKU @espku.org · 1d

💊 #ESPKUConference2025: How can patient orgs help get drugs approved?

Message from 1 HTA expert and 2 patients orgs leaders:

🔹 Know your HTA & reimbursement process
🔹 Tell your story – it matters 💬
🔹 Don’t give up 💪

#PatientAdvocacy #PKU #RareDiseases #HealthPolicy

E.S.PKU @espku.org · 3d

Congratulations to Association nationale Les Feux Follets, our member organisation, on celebrating their 30th anniversary. 🎉 This weekend, they’re marking this special milestone during their annual conference 🇫🇷

E.S.PKU @espku.org · 3d

Today is #WorldMenopauseDay! 🌍
Women with #PKU face hormonal changes that can affect both metabolic control and mental health.
They deserve understanding, support, and research that helps them feel their best through every stage of life.

E.S.PKU @espku.org · 6d

🎀 October is #BreastCancerAwarenessMonth 🎀

Women with #PKU — remember:
🔹 Regular check-ups (USG or mammography)
🔹 Self-exams 👐
🔹 Inform your PKU doctor if anything unusual is found

💪 Early detection saves lives!

E.S.PKU @espku.org · 7d

🌍 E.S.PKU President Eric Lange joined 'Low Protein Traces of Life: PKU Family Meetings' in Istanbul 🇹🇷, sharing European PKU updates, new treatments & importance of doctor–patient relationships. Grateful to PKU Turkey for the warm welcome! #PKU #ESPKU #PKUTurkey

E.S.PKU @espku.org · 9d

How Europe defines Unmet Medical Need will shape the future of rare disease care. At #EHFG2025, ESPKU joined experts and patient voices to ensure PKU and rare communities are not left behind. #ESPKUatEHFG2025

E.S.PKU @espku.org · 10d

It's World Mental Health Day! We use #WMHD2025 to emphasize the influence of PKU on mental health of patients & their families. This year in accordance with the theme 'Mental health in humanitarian emergencies' we urge everyone to remember about patients that experience them.

E.S.PKU @espku.org · 12d

'Patients Meet Professionals' one of the standout sessions at #ESPKUConference2025, shed light on the challenges adult PKU patients face in clinical settings 💡👥. It also highlighted the need for clearer communication and transparency around clinical trials 🔬🤝

E.S.PKU @espku.org · 18d

Special thanks to European Health Forum Gastein for the platform, and to our moderator Tresja Bolt for guiding such a thoughtful and engaging discussion.

E.S.PKU @espku.org · 18d

Together with Steffen Thirstrup (EMA), Anita MacDonald (Birmingham Women’s and Children’s Hospital), Rosa Castro (EURORDIS) and Thomas Bols ( @ptcbio.bsky.social ) we explored how Europe can define UMN in ways that reflect patients’ lived experience & ensure communities like PKU aren't left behind

E.S.PKU @espku.org · 18d

A big thank you from everyone at @espku.org to all those who joined our #EFHG2025 Panel discussion on: Defining Unmet Medical Need: What Counts?

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E.S.PKU @espku.org · 20d

One day to go before our ESPKU #EFHG2025 panel on Defining Unmet Medical Need: What Counts? #ESPKUatEHFG2025

14:30 | 2 October 2025 | Bad Gastein Conference Centre

Don't miss the chance to follow this discussion on how we can design patient-centred systems for the future.

E.S.PKU @espku.org · 20d

⏳ In just 2 days!

Join our #EHFG2025 panel on Unmet Medical Needs – a key topic shaping access to innovative therapies, incl. for people with PKU.

📅 Thu, 2 Oct | 14:30–15:45 CEST
💻 Free online registration still open 👉 ehfg.idloom.events/european-hea...

#ESPKUatEHFG2025

European Health Forum Gastein 2025

EHFG 2025: Rethinking solidarity in health Healing Europe´s fractured social contract

ehfg.idloom.events

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E.S.PKU @espku.org · 20d

Thank you for attending #ESPKUConference2025 and see you next year in Copenhagen!

E.S.PKU @espku.org · 22d

We were privileged to have previous Sheila Jones Award winners at #ESPKUConference2025

E.S.PKU @espku.org · 22d

Congratulations to this year's winners of the Sheila Jones Award Ann Oun and Maarja Utno from the Estonian PKU organisation!

E.S.PKU @espku.org · 26d

Your name tag has a QR code that contains #ESPKUConference2025 program.

E.S.PKU @espku.org · 26d

Remember to register and pick up #ESPKUConference2025 materials. Remember to always carry your name tag!

E.S.PKU @espku.org · 26d

E.S.PKU @espku.org · Sep 19

📢 September is Newborn Screening Awareness Month!

👶 Children, no matter where born, must have access to newborn screening. It should be mandatory as it improves and safes lives.

‼️We must advocate to be sure that newborns around the world are screened for PKU and other conditions.

E.S.PKU @espku.org · Sep 17

Ahead of #EHFG2025 E.S.PKU reminds of its paper on Unmet Medical Needs (UMN) as EU revises its pharma legislation 💊🇪🇺

📌 PKU shows that despite dietary therapy, major unmet needs remain.

Read more 👉 www.espku.org/wp-content/u...

E.S.PKU @espku.org · Sep 17

We are pleased to inform that all participants of #ESPKUConference2025 have received all the necessary information at the email address provided during registration.

E.S.PKU @espku.org · Sep 17

PKU matters! Join E.S.PKU as audience participants at #EHFG2025 panel:
🧩 Defining Unmet Medical Need: What Counts?
📅 2nd October 2025 | 14:30 – 15:45 CEST

Let’s show that the PKU community is strong & united! 🌍💪

🔗 Register online:https://ehfg.idloom.events/european-health-forum-gastein-2025

E.S.PKU @espku.org · Sep 17

📢 We are excited to announce that Ajinomoto Cambrooke, Inc. Nutricia and Vitaflo are silver sponsors of the 39th E.S.PKU Conference!
Attendees of the #ESPKUConference2025 will have the opportunity to visit their booths and meet their teams during the Industrial Exposition.

E.S.PKU @espku.org · Sep 10

📢 We are excited to announce that
@ptcbio.bsky.social is a gold sponsor 🥇 of the 39th E.S.PKU Conference!

Attendees of the #ESPKUConference2025 will have the opportunity to visit their booth during the Industrial Exposition. We look forward to seeing you there!