Hanna

Psychologist

[ESPKU @official_espku]

Feb 28 is #RareDiseaseDay – a time to highlight #PKU! 🧬

PKU affects all ages, but treatment barriers remain:
🥣 Lack of PKU food reimbursement & access to the newest treatment options
🏥 Adults stuck in pediatric care
🩺 Low medical awareness
🩸 Newborn screening saves lives

[NPKUA @NPKUA_Info]

In 2025, we are introducing a monthly webinar series...PKUniversity! 🏫

It all starts February 24...topic and registration information coming to you soon!💡

#NPKUA #PKUniversity

[NPKUA @NPKUA_Info]

Researchers at Clemson University are conducting a study explore the experiences, challenges, and needs of caregivers of individuals living with PKU as they transition from pediatric to adult health care management. Scan the QR code to learn more!

[Anita MacDonald @macdonj]

New Low protein cheese list https://t.co/XyzBz2mAX6

[Anita MacDonald @macdonj]

First successful outcomes of pegvaliase (PALYNZIQ) in children https://t.co/gyiWPVwIzh

[NPKUA @NPKUA_Info]

Do you have PKU and want to take part in a research study? Contact the study coordinator, Scout Bolton, to learn more or to participate!

[NPKUA @NPKUA_Info]

Your generosity can help us get closer to life-changing advancements and a cure. Please donate and share our post. https://t.co/EYcz9qbkq0 #PKU #PKUStrong #NPKUA #CurePKU #GivingTuesday #GivingTuesday2023

[NSPKU @NSPKU]

#PKU community - can you help?
Please email [email protected] if you/your child is able and willing to participate?
Thank you!
Please RT/repost 😃

[PKU Association IE @PKU_Ireland]

‘We don’t know enough about PKU - research needs to be better’

Brilliant presentation from Kate & Caroline from @NSPKU covering PKU advocacy in the UK - discussing successes, future campaigns and need for better understanding for #PKU

[NPKUA @NPKUA_Info]

Save the date and join us July 18-21, 2024 for the next NPKUA conference. We are excited to see you in Virginia!

[ESPKU @official_espku]

Have you registered for this year`s ESPKU Conference? These are subjects that will be discussed during our Conference #ESPKU2023 If you don`t want to miss it register today to be part of it. Go to:
https://t.co/3DMFukVZy2

[Pauline O'Connor @poconnor]

New series on #Sapropterin (#Kuvan)

I have spent months trialling Sapropterin. It has proven a hard road, but I feel ready to share my experience in a series of 3 blogs.

Sapropterin trial, part 1: genetics & patience.

to https://t.co/lOwlfUWIJa

#LivingWithPKU #PKU #AdultPKU

[Anita MacDonald @macdonj]

The protein exchange tracker is now available on PKU Bite. Please download from app stores (but delete your old version first)

[PKU News @howmuchphe]

Applications for The Guthrie-Koch Scholarship are now being accepted! This scholarship is open to anyone with PKU pursuing their first post-secondary degree or certificate from an accredited program. Apply at https://t.co/q3KKBk5K64 -- the deadline to apply is February 1st!

[ESPKU @official_espku]

Thank you to everyone who arrived in Seville to participate in this year`s ESPKU Conference. Many of you when describing the last days repeatedly use word reunion. #espkufamilyreunion #espku2022

[Hanna @AnnaShemsheleva]

@mission_rusd Thank you @mission_rusd for such a beautiful Fall Festifal!💛

[ESPKU @official_espku]

Be part of this year`s face-to-face E.S.PKU Conference to not miss the lectures and discussions on the topics below! Register today!

https://t.co/K8X7YtyWmG

#ESPKU #ESPKUConference2022 @Metabolicos_es

[Hanna @AnnaShemsheleva]

@macdonj My little monkey starts too.

[Hanna @AnnaShemsheleva]

@NSPKU Hi from California🙂

[Hanna @AnnaShemsheleva]

@macdonj 👏greet idea!