Dr Colm Galligan, parent of a child with #PKU , speaks about navigating access to drugs for #raredisease in Ireland

Thank you Chloe, emer oreilly and Colm for raising awareness of PKU for which there is no cure and the need for access to Enzyme Replacement Therapy (also known as Pegvaliase, Palynziq, Pegpal) for a subgroup of patients for whom Low Protein Dietary Therapy is deemed unsuitable. 🙏👏🙌

Exchange containing vegetables in PKU

Robinsons drinks: these are all low protein/aspartame free/exchange free

BLOOD ANALYSER UPDATE:

#PKU community across Ireland to experience delays for blood results as a result of service of blood analyser. See below 👇🏻

#BrainHealth #PKU CHI at Temple Street
Stephen Donnelly #RareDisease

Freedom Gummies – Moji’s: low protein/exchange free FreedomConfectionery

Freedom Gummies Colas: low protein/exhange free FreedomConfectionery

#GetRareAware Take Action on getrareaware.ie
Let's expand Newborn Bloodspot Screening services - more commonly called the 'heel prick test'. Screening provides early diagnosis & access to support and treatment. Listen back to our first webinar. youtube.com/watch?v=T0oH4v…

Excited to share insights on Engaging Effectively: Tips for Researchers to Foster Meaningful Public-Patient Involvement & Engagement in Research! It's crucial to bridge the gap between academia & the community for impactful outcomes IFNA
#ResearchEngagement #PPI 🌟🔬

Maximal dietary responsiveness after tetrahydrobiopterin (BH4) in 19 phenylalanine hydroxylase deficiency patients:… pubmed.ncbi.nlm.nih.gov/38469087/

Supplementation for Performance and Health in Patients with Phenylketonuria: An Exercise-Based Approach to Improvin… pubmed.ncbi.nlm.nih.gov/38474766/

Nomo Mini Bars:5 x 12g bars = 1g protein (1 PKU exchange)

First successful outcomes of pegvaliase (PALYNZIQ) in children pubmed.ncbi.nlm.nih.gov/38515136/

Birthday cake inspiration! #lowprotein #PKU Promin Metabolics by Danielle Freeman 👏🏻🎂🎈

Heinz Classic Barbie Cue Mayo Barbecue Sauce: low protein/exchange free