February 28, 2014

Rare Disease Day

Share your rare, Share your care

2018 Day Programme


Date Activity Venue
7 February  Deadline for the school competition All governmental & private schools
10 February CAGS Scientific report Center of Arab Genomic Studies
17 February Workshops: 3 parallel tracks for families, nurses & dieticians Mohammed  Bin Rashid Academic Medical  Center
18-22 February Awareness lectures for  the secondary schools' students  24 Governmental  Secondary schools
23 February The families open day The Dubai Dolphinarium

Workshops - 17 February

Mohammad Bin Rashid Academic Medical Center, DHCC
Time 1st track( Families) 2nd track(Nurses) 3rd track (Dieticians)
9:00-9:30am Registration & Networking
  • The essential of rehabilitation for rare disease patients
  • The Psychological Journey of Care giving for Rare Diseases
  • Trauma Informed Care & Healing in Health Care
  • Concept & basics of Genetics and practical application in Nursing
  • Introduction to Metabolic disorders
  • Principles of treatment of Inborn Metabolic Diseases
  • PKU
  • Nutrition Management for Maple Syrup Urine disease
12:30-2:00pm Lunch break
  • Pre-implantation genetic diagnosis
  • Focus on Nursing Management of Inherited Metabolic Disorders: Urea Cycle Disorders
  • Prevention of Rare Disease
  • Online tools for metabolic diet calculation
  • Dietary management of urea cycle disorders

Schools' awareness campaign - 18-22 February

Date The Emirate The school
18/2 Dubai
  • Al - Sufouh Secondary School for girls
Al Fujairah
  • Dibba Al - Fujairah Secondary School for Girls
  • Umm Al - Mo'meneen Secondary School
Abu Dhabi
  • Um Al Arab for girls
  • Al Shawamekh for Girls
  • Al Riyada for Girls
19/2 Dubai
  • Al Salam secondary School - Girls
Al Sharjah- Khorfakkan
  • Bahethat Al - Badia Secondary Girls School
  • Al - Khalil Bin Ahmed Secondary School for Boys
Al Ain
  • Mariam Bent Sultan for girls
  • Al Jahili for girls
  • Um Al -Emirate for girls
20/2 Dubai
  • Asmaa Bint Al - Nu'man for  Girls
Al Ain
  • Al Dahmaa for boys
  • Khaled Bin Al Waleed for boys
21/2 Dubai
  • Mohammed bin Rashid for boys
  • Hamdan Bin Rashid Secondary School
Sharjah- Kalba
  • Al - Mahmood Secondary School
  • Bou heirad Secondary School for Girls
Abu Dhabi
  • Abu Dhabi school for Boys
  • Al Etihad school For boys
  • Darwish Bin Karam for Boys
22/2 Dubai
  • Applied Secondary school for Boys

The families' fun day - 23 February

Dubai Dolphinarium, Creek park
The time The activities
2-3pm Registration & Activities( Photo shooting, video interviews with the families)
3-4pm The dolphin and the illusion show
4-6pm Honoring the school winners
Activities( Photo shooting, video interviews with the families)