Detailed Programme

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)

0800 – 0830

Registration
(Level 2, Ballroom 2 Foyer)

0830 – 0930

The Impact Of Rare Diseases In Asia
(Level 2, Ballroom 1)
 

Moderator:
Mr Rajakanth R. (Rainbow Across Borders, Singapore)
Ms Caron Molster (Department of Health, Western Australia)

1. Rare Disease Impact Study

2. Establishing Key Findings

Video: Spinal Muscular Atrophy
(Level 2, Ballroom 1)

Tea Break
(Level 3, Studio Room 1 Foyer)

1015 – 1230

Physicians & Health Officials: Understanding a Rare Disease Registry
(Level 3, Studio Room 1)

Hosted by:
Dr. Ee Shien TAN (KK Women’s and Children’s Hospital, Singapore)

Guest Speaker:
Prof. Matthew BELLGARD (Murdoch University, Australia)

Panellists:
Dr. Mary Anne CHIONG (University of Philippines Manila, Philippines) Dr. Yi Wen HENG (Sanofi Genzyme) 

1230 – 1400

Lunch
(Level 2, Ballroom 2)
 

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

1400 – 1530

Physicians & Health Officials: Strategic Framework for Rare Diseases
(Level 3, Studio Room 1)
 

Hosted by:
Dr. Damayanti Rusli SJARIF (RSCM Dr. Cipto Mangunkusumo General Hospital, Indonesia)
 

Guest Speaker:
Ms Caron MOLSTER (Deputy Director, Office of Population Health Genomics, Department of Health, Western Australia, Australia) 

1530 – 1600

Tea Break
(Level 3, Studio Room 1 Foyer)

1600 – 1700

Physicians & Health Officials: Strategic Framework for Rare Diseases (Continued)
(Level 3, Studio Room 1)

0800 – 0830

Registration
(Level 2, Ballroom 2 Foyer)

0830 – 0930

The Impact Of Rare Diseases In Asia
(Level 2, Ballroom 1)
 

Moderator:
Mr Rajakanth R. (Rainbow Across Borders, Singapore)
Ms Caron Molster (Department of Health, Western Australia)

1. Rare Disease Impact Study

2. Establishing Key Findings

Video: Spinal Muscular Atrophy
(Level 2, Ballroom 1)

Tea Break
(Level 2, Ballroom 2& Level 3, Studio Rooms 1-3 Foyer)

1030 – 1230

Concurrent Plenary Workgroup Discussions

Workgroup 1: Patient Support Organisations
(Level 2, Ballroom 1)

Facilitators:

1. Ms Yukiko NISHIMURA (ASrid, Japan)

2. Mr Tateo ITO (Japan Patients Association & HOP, Japan)

3. Ir. Yee Seng LEE (Malaysian Lysosomal Disease Association, Malaysia)

4. Dato’ Hatijah AYOB (Malaysian Rare Disorders Society, Malaysia)

5. Mr Edwin GOH (Hemophilia Society of Malaysia, Malaysia)

6. Mr Ekawat SUWANTAROJ (Thai Hemophilia Patient Club, Thailand)

7. Ms Preeya SINGHNARULA (Thai Rare Disease Foundation, Thailand)

8. Ms Sherena LOH (Muscular Dystrophy Association (Singapore), Singapore)

9. Mr Kenneth MAH (Rare Disorders Society (Singapore), Singapore)

10. Mr David LIM (Pulmonary Hypertension Singapore, Singapore)

1030 – 1230

Workgroup 2: Patients & Caregivers
(Level 3, Studio Room 2)
 

Facilitators:
Dr. David RINTELL (Sanofi Genzyme, USA)
Mr Gregory VIJAYENDRAN (Rainbow Across Borders, Singapore) 

1030 – 1230

Workgroup 3: Pharmaceutical Representatives
(Level 3, Studio Room 3)
 

Facilitators:
Ms Poh Lin LIM (Sanofi Genzyme)
Ms Carolyn HALL (Shire)

Lunch
(Level 2, Ballroom 2)
 

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

Concurrent Stakeholder Training Sessions
 

Group 1: Patient Support Organisations
(Level 2, Ballroom 1)
 

Participation in Healthcare Decision Making
Mr Kin Ping TSANG (Hong Kong Alliance for Rare Diseases, Hong Kong)
Ms Cynthia MAGDARAOG (Philippine Society for Orphan Disorders, Philippines)
Mr Boon PUTTHIPONGTANACHOT (Genetic LSD Foundation, Thailand)
 

Group 2: Patients & Caregivers
(Level 3, Studio Room 2)
 

Caring for the Caregiver
Dr. Shan NARAYANAN (Fatimah Hospital, Malaysia)

1530 – 1600

Tea Break
(Level 2, Ballroom 2& Level 3, Studio Rooms 1-3 Foyer)

1600 – 1700

Concurrent Stakeholder Training Sessions (Continued)
 

Group 1: Patient Support Organisations
(Level 2, Ballroom 1)
 

Communication Strategies for Rare Diseases: Uncommon Opportunities
Ms Jenny PUTIN (AMICULUM)
 

Group 2: Patients& Caregivers
(Level 3, Studio Room 2)
 

Caring for the Caregiver
Dr. Shan NARAYANAN (Fatimah Hospital, Malaysia) 

0900 – 1700

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

1000 – 1200

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

1400 – 1600

Music Workshop: The Art of Music Making
(Level 2, Annex 1)
Ms Carol Cheng (Specialist Teacher, Singapore)

0800 – 0830

Registration
(Level 2, Ballroom Foyer)

0830 – 1030

Overcoming the Impact of Rare Diseases in Asia
(Level 2, Ballroom 1)

1030 – 1100

Tea Break
(Level 2, Ballroom Foyer)

1100 – 1200

Conference Round Up Declaration/ Call for Action
(Level 2, Ballroom 1)

1200 – 1300 

Lunch
(Level 2, Annex 1)