Day 1

0800 – 0900

Registration
(Level 2, Ballroom 2 Foyer)

0900 – 0930

Opening
(Level 2, Ballroom 1)

0930 – 0950

(Level 2, Ballroom 1)

Guest Performer
“Every Little Smile” – Music and lyrics by Ms Juwita SUWITO

Performances by Malaysian Patients

Malaysian Rare Disorders Society
“Duchenne” – Mr Muhd Zakur HADIF (written by Irfan Hafiz, Sri Lanka)
"Be Yourself” – Ms Nawal Alwani binti ABD KHAHAR &Mr Mohd Nazmi Al-Hakim bin ABD KHAHAR

Malaysia Lysosomal Diseases Association


 Yue liang dai biao wo de xin, The Moon Represents My Heart – Ms Kelly NG

Malaysia Metabolic Society
“I Have a Dream” – Ms Nurhafizahwati Binti ROSLI&Mr Muhd Haziq Irfan bin ROSLI 

0950 – 1050

Keynote Speech –Making Rare Diseases an Asian Health Priority
(Level 2, Ballroom 1)
Prof Tarun Weeramanthri (Government of Western Australia, Australia)

1050 – 1115

Tea Break
(Level 2, Ballroom 2& Foyer)

1115 – 1245

Stakeholders Panel – Building A Multi-Stakeholder Ecosystem
(Level 2, Ballroom 1) 

Moderators:
David Rintell (Sanofi Genzyme, USA)
Rajakanth R. (Rainbow Across Borders, Singapore)

Panellists:

1. Mr Ekawat Suwantaroj (Thai Hemophilia Patient Club, Thailand)

2. Ms Yap Sook Yee (Malaysian Rare Disorders Society, Malaysia)

3. Ms Sherena Loh (Muscular Dystrophy Association Singapore, Singapore)

4. Ms Dang Cam Tu (Vietnam Women’s Union, Vietnam)

5. Mr KP Tsang (Hong Kong Alliance for Rare Diseases, Hong Kong)

6. Mr Lin Yi Ping (Taiwan Foundation for Rare Disorders, Taiwan)

1245 – 1415

Lunch
(Level 2, Ballroom 2)
 

Patient Support Organisations: Poster Sharing Session – Group A
(Level 2, Ballroom 1Foyer) 
 

Private Luncheon Hosted by Sanofi Genzyme – By Invitation Only
(Level 3, Studio Room 1 & 2) 

1415 – 1420

Video: Idiopathic Pulmonary Fibrosis
(Level 2, Ballroom 1)

The Philippines Story
(Level 2, Ballroom 1)

Dr. Carmencita D. PADILLA (University of the Philippines Manila, Philippines)

1515 – 1530

Tea Break
(Level 2, Ballroom 2& Foyer)

1530 – 1700

Medical Panel – Definition & Challenges In Rare Disease Management
(Level 2, Ballroom 1)
 

Moderators:
Prof Thong Meow Keong (University of Malaya Medical Centre, Malaysia)
Dr Jeremy Lim (Oliver Wyman, Singapore)
 

Panellists:

1. Dr. Damayanti Rusli Sjarif (Faculty of Medicine Universitas Indonesia)

2. Prof Duangrurdee Wattansirichaigoon (Department of Pediatrics, Faculty of Medicine Ramathibodi Hospital, Mahidol University, Thailand)

3. Dr Tan Ee Shien (IEM, KK Women’s and Children’s Hospital. Singapore)

4. Dr Nguyen Thi Mai Huong (Vietnam National Hospital of Pediatrics, Vietnam)

1700 – 1830

Free Time

1830 – 1900

1900 – 2100

Networking Dinner Cocktail – By Invitation Only

Networking Dinner Hosted by Shire – By Invitation Only
(Level 2, Ballroom 2)

ALL DAY

Shire Rare Kids Discovery Booth
(Level 2, Annex 1)

1130 – 1230

Caregiver Workshop: Release, Relax & Rejuvenate
(Level 3, Studio Room 3 – Maximum 10 pax)
Ms Carol Cheng (Specialist Teacher, Singapore) 

1400 – 1600

Art Therapy Workshop I: Feelings & Colours
(Level 2, Annex 1 – Children, Youth, Adult Patients & Caregivers)
Ms Amanda Chen (Art Therapist, Singapore) 

1600 – 1700

Caregiver Workshop: Release, Relax & Rejuvenate
(Level 3, Studio Room 3 – Maximum 10 pax)
Ms Carol Cheng (Specialist Teacher, Singapore)