Live Unlimited PKU Presents “Living with PKU in Challenging Times”
‘A Live Panel Event on Facebook’. This Sunday 28 th June @ 1pm
The current pandemic is affecting how we go about our daily lives. For many, this uncertainty and change is challenging and can impact our mental health.
Join the Live Unlimited team on International PKU Day this year for an engaging discussion featuring healthcare professionals, patient groups and patients who will share their perspectives and answer questions on:
Living with Phenylketonuria (PKU) in uncertain times
The impact of PKU on mental health
Management of PKU
Our panel line-up includes:
Susan Clever, Consultant in Medical Psychology (Germany)
Johannes Kraemer, PKU Clinician (Germany)
Agata Bak, Content Manager for the Spanish Federation of Hereditary Metabolic Diseases (FEEMH) (Spain)
Marianne Foody, Young PKU adult (Ireland)
Niko Costantino, Head of PKU Activities at Cometa ASMME (Italy)
Tune into the live discussion on the 28 th June using the Zoom link below.
The discussion will also be posted on our Facebook page PKULiveUnlimited.
Register @: https://us02web.zoom.us/webinar/register/WN_B9nuMiYBQdSbijw82S2hmQ
We look forward to seeing you there!
About PKU and Live Unlimited PKU
PKU is a rare, lifelong metabolic condition which limits a person’s ability to break down protein and that can cause cumulative toxic effects on the brain, resulting in neurological symptoms.
The Live Unlimited campaign aims to raise awareness of the lifelong condition, PKU, and to support everyone living with the condition to ask policymakers to provide better access to specialist and frequent adult care. We’re calling for consistent provision of metabolic specialists, dieticians and psychological support for every adult with PKU in Europe – as set
out by the 2017 European Guidelines for PKU.
The campaign has been funded and developed by BioMarin in collaboration with these organisations: AMMeC and Cometa A.S.M.M.E (Padua) (Italy), Les Feux Follets (France), Svenska PKU-föreningen (Sweden), PKU Aile Derneği (Turkey), and FEEMH (Spain).
If you have any questions about the event or the campaign, please
email: LiveUnlimitedPKU@portland-communications.com
Further information available – liveunlimitedpku.com I @PKULiveUnlimited I
https://www.youtube.com/watch?v=Y8TKJtSnZpU
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