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4th UAE Rare Disease Society Congress 2026

Navigating PKU:
From Challenges to Confidence
An Interactive Family Workshop by PTC
19 September 2026 | Le Meridien Dubai Hotel
Register Now
Navigating PKU:
From Challenges to Confidence
An Interactive Family Workshop by PTC
19 September 2026 | Le Meridien Dubai Hotel
Register Now

Join us for an engaging and practical workshop designed to empower individuals with PKU and their families through expert guidance, hands-on activities, and shared learning experiences.

Workshop Objectives

  • Equip families with clear, practical PKU dietary management skills.
  • Strengthen understanding of treatment journey challenges from a family and HCP perspective.
  • Improve confidence in protein counting, shopping, meals preparation, and formula adherence.
  • Provide interactive, enjoyable learning experiences for both adults and children.
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Agenda Structure

A. THEORETICAL PART

(Led by dieticians – presentations & open dialogue)

Topics covered:

  • Why dietary management is the cornerstone of PKU care
  • Common difficulties families report:
    • Picky eating
    • Formula acceptance
    • Social situations (school, restaurants, birthdays)
    • Caregiver fatigue
  • Managing expectations through life stages (infancy → adolescence → adulthood)
  • Emotional aspects: stress and adherence burden
  • Portion measurement & protein‑counting accuracy
  • Reading food labels correctly
  • Navigating hidden ingredients
  • Leveraging mobile apps/tools

 

Interactive element:
Short Q&A with families to share real‑life situations and problem‑solve as a group.

A structured conversation allowing:

  • Families to express real obstacles
  • Dieticians to respond with evidence‑based strategies
  • Exchange of ideas between caregivers and professionals
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B. PRACTICAL PART

(Hands‑on learning designed for maximum engagement)

1. Cooking Workshop — “PKU Kitchen Lab”

Led by: Dieticians + Chef familiar with PKU diets

Stations may include:

  • Creative snacks for picky eaters
  • Quick family recipes
  • Formula preparation tips

Activities:

  • Families cook in small groups
  • Dieticians supervise and troubleshoot
  • Tasting session for all

Goal: Build confidence and show that the PKU diet can be enjoyable, feasible, and tasty.

2. Educational Awareness Stations

Participants rotate between learning booths:

Station 1: Protein Counting Station

  • Hands‑on practice calculating Phe content
  • Label‑reading exercises
  • “Make your own safe plate” activity

Station 2: Smart Shopping Station

  • How to build a PKU‑friendly shopping list
  • Live demonstration of comparing products
  • Tips for identifying hidden protein in everyday foods

Station 3: Formula & Supplement Optimization

  • How to improve adherence
  • Flavour‑mixing tips
  • Age‑appropriate formula routines

Station 4: Behaviour & Feeding Support Station

  • Expert tips for picky eaters
  • Encouraging food exploration
  • Positive mealtime behaviours
  • Managing parental stress