PKUDay 2020
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Events around Internationl PKU Day 2020
“Not just a paediatric disease, adults too!”
Thank you @eileentreacy3 for your presentation #PKUMEPAlliance outlining #PKU is #lifelong #raredisease requiring specialist expertise @official_espku @EUParliament1 #PKUDay2020 #PKU #mentalhealth #brainhealth
Today at ESPKU meeting @official_espku Prof. Eileen Treacy @eileentreacy3 remembering us #PKU is not just a paediatric disease and all remaining challenges. Excellent. @PKU_Day @Metab_ERN
Did you celebrate International PKU Day last week? This recipe for low protein cake pops is a quick and easy was to celebrate PKU and the low protein diet: https://www.lowproteinconnect.com/Recipes/Desserts/Lemon-Cake-Pops/
#InternationalPKUDay #PKUDay2020 #LowProteinDiet #LowProtein #LowProteinConnect #LowProConnect
“People are entitled to live healthy lives”
Huge thanks @SeanKellyMEP for attending/speaking @virtual @official_espku #PKUMEPAlliance > Need for change and lifelong treatment PKU #PKU. @PKU_Ireland looks forward to working together #pkuday2020 #raredisease #pku
A pleasure to be able to join the #PKUMEPAlliance online policy roundtable hosted by my colleague @FitzgeraldFrncs this morning. We must work to improve access to #PKU treatment and ensure nobody is left behind, irrespective of condition, age or any other reason @official_espku
Huge thanks @FitzgeraldFrncs from @PKU_Ireland for cohosting today’s 2nd @official_espku #virtual EuropeanParliamentCross PartyAllianceRoundtable: AIM #LifelongCare #PKU. Brilliant discussion + consensus from all > critical unmet need & best practice aim #PKUDay2020 #RareDisease
Delighted to co-host this mornings #virtual roundtable with @official_espku on ensuring lifelong access to treatment and care in PKU.
Thanks to all MEPs who attended 👏🏻
Thank you to all who joined today’s 2nd European Parliament Cross-Party Alliance on PKU coming together to address the unmet need of ‘Lifelong Care’ for PKU adults via @official_espku
#PKUDay2020 #rareDisease #MentalHealth #BrainHealth #Critical
The European Parliament Cross-Party Alliance on PKU - E.S.PKU
ESPKU is in charge of coordinating the European Parliament Cross-Party Alliance on PKU , which was launched in March 2020 . What is the European Parli...
www.espku.org
Today, in celebration of #PKUDay2020 , as part of the @official_espku initiative the EU Cross Party Alliance a Video Meeting took place. It aimed to raise awarness on importance of access to adult care. #ESPKU #PKUDay
Video Meeting of #PKUMEPAlliance brought together MEPs and stakeholders to explore relevant unmet needs in PKU: Access to adult care. Growing numbers of adult PKUers must no longer rely on too few doctors and dieticians, who’s commitment go well beyond professional obligation.
Today at ESPKU meeting @official_espku Prof. Eileen Treacy @eileentreacy3 remembering us #PKU is not just a paediatric disease and all remaining challenges. Excellent. @PKU_Day @Metab_ERN
Thanks those who took part in work-out for #PKUday2020, & for the lovely comments, sorry couldn't reply live but seen them since & made me 🤣. For those who have asked if the video is still available it is on the #NSPKU YouTube channel: with other videos.
#PKUDay #NSPKU
A massive thank you to the large number of extremely talented young people (some VERY young!) who made our day special by celebrating with drawings, paintings, handprints, cakes, dances, messages, explanations & all round
Creative #pku Genius!
You made our day! 😍
#PKUDay2020
Thanks to TOUGH questionners
@VickyAncell (both Lucie & Sophie) @kathythompson22
@chelseagloverx
Scotland @mrs_martin_2012, Boyd & Katy
@CeryssP10 @RowlandsTesni @ClaireRowlands8
@chriscassidy86 & Daragh, AnneMarie & her twins
You have all been BRILLIANT
📣📣📣
#PKUDay2020
A Huge "Thank you"
@LouLamaris - energised start
Anne Green, telling Sheila Jones' story so well
@LizTwistMP celebrating talent amongst our children w #pku and then kicking off NSPKU Questions; @Rees4Neath @neilgraysnp answering questions
@TomChimiak star + director