Day 2

Date / Time

18 Nov 2016 (Fri) - Physicians & Health Officials

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

0930 – 0935

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

0935 – 1015

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)

 

 

Date / Time

18 Nov 2016 (Fri) – Other Delegates

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

0930 – 0935

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

0935 – 1000 Introduction To Plenary Workgroup Meetings
(Level 2, Ballroom 1)

Topic: Understanding the Impact of Rare Diseases in Asia Content Partner: AMICULUM

Presenters:

Ms Jenny PUTIN (AMICULUM Asia)
Ms Stefanie CHUAH (AMICULUM Asia)

Workgroup 1: Patient Support Organisations
Workgroup 2: Patients & Caregivers
Workgroup 3: Pharmaceutical Representatives 
1000 – 1030

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)

1230 – 1400

Lunch
(Level 2, Ballroom 2)
 

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

1400 – 1530

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) 

 

 

Date / Time

18 Nov 2016 (Fri) – Children & Youth Activities

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)

 

Conference Venue

Hotel Pullman Bangsar

No Tower 3 59200, 1, Jalan Taman Pantai,
Taman Bukit Pantai, 59100 Kuala Lumpur,
Wilayah Persekutuan Kuala Lumpur, Malaysia

Phone: +60 3-2298 1888