Rare Disease Asian Conference 2015 Programme Outline Date / Time 9am – 12 pm 9 Mar 2015 (Mon) Arrival of attendees from overseas patient groups 10 Mar 2015 (Tue) Training Module II Expected attendance: 25-30 pax 11 Mar 2015 (Wed) Training Module IV Sharing by Taiwan Foundation for Rare Disorders, Korean Organisation for Rare Diseases, Rare Voices Australia 12 pm Lunch Lunch Lunch 2-5 pm Training Module I Training Module III Rainbow Across Borders Rare Diseases Asia Alliance Meeting Skill Building, Best Practice sharing and Networking for Patient Organisations in Asia Pacific region: High Impact Communication For Maximum Results Pre-conference Committee Meeting Poster Exhibition set up/ Genzyme Expression of Hope art exhibition 6-9 pm Dinner & Networking 40 pax (halal) Out of hotel Date / Time 9am – 12 pm 12 Mar 2015 (Thu) General Session 1) 2) 3) 4) 5) Opening Speech – Prof Denise Goh Li Meng Opening video and launch of Rare Disease Alliance Performance by RD patients + Photo opportunity with Minister/GOH Minister/GOH Speech Key Note Speaker – Dr Tarun Weeramanthri (Australia) Exhibition Opening + GOH guided tour Press Conference Door stop interview 13 Mar 2015 (Fri) 9 – 10.30 am: Approaches to Help Patient Engage in Their Health Moderator: Dr. Sashikumar Ganapathy, Club Rainbow (Singapore) 1) 2) 3) 4) 5) 6) 7) PSOD HKMPS RDSS MLDA/ MMS ORDI TFRD Japan Topics include: psychosocial, marketing/media, awareness, fundraising, policy 10.30 – 11 am: Tea Break 11 – 11.30 am: Conference Round Up 11.30 am – 12 nn: Poster Sharing Session 1  Each participating patient group to present a poster about their organisation and a significant project  Target no. of posters: 15 - 20  2 groups to rotate (30mins each) *Goodie bags sponsored by Genzyme 12 – 12:30 pm: Poster Sharing Session 2 12.30 pm Lunch Screening of videos from Asian Patient Groups Lunch 1:30 – 3 pm Panel Discussion: Landscape in Asia (Medical Perspective) Moderator: Dr. Carmencita D. Padilla, Founding Chairman, Philippines Society for Orphan Disorders (PSOD) Panelist: 1) Taiwan – Shuan-Pei Lin (Mackay Memorial Hospital) 2) Singapore – Prof Denise Goh Li Meng/ Dr Tan Ee Shien 3) Vietnam – Dr Dung Chi Vu (National Hospital of Pediatrics) 4) Thailand – Dr Dua Nudi 5) Malaysia – Dr Keng 3 – 3:30 pm Tea Break 3:30 - 5 pm Panel Discussion: Landscape in Asia ( Patient Group Perspective) Social Programme for Patients & Caregivers Moderator: Dr Tarun Weeramanthri (Australia) - Outing to Universal Studios Singapore/ Singapore Zoo & River Safari Panelist: 1) Taiwan – Representative from Taiwan Foundation for Rare Disorders (TFRD) 2) Philippines – Cynthia Magdaraog (PSOD) 3) Hong Kong – Stephen Ma (HKMPS) 4) Singapore – Gregory Vijayendran/ Kenneth Mah/ Patricia Ng (CRS/RDSS) 5) Malaysia – Lee Yee Seng/ Zahimurhakim Zahib (MLDA/ MMS) 6) India – Prasanna Kumar B Shirol (ORDI) 7) Japan – 6-9 pm Dinner & evening programme for Patients & Caregivers 12 March 2015 (Thursday) GOH Invitation: 1. 2. 3. 4. Mr Gan Kim Yong - Minister for Health Dr Amy Khor - Senior Minister of State (Health & Manpower) Dr Lam Pin Min - Minister of State, Ministry of Health Associate Professor Muhammad Faishal Ibrahim - Parliamentary Secretary (Health & Transport) Other Invitees: 1. Dr Gan Kim Loon – President, Haemophilia Society of Singapore 2. A/Prof Daniel Goh Yam Thiam - President of the Asean Paediatric Federation and the Vice-President of the College of Paediatrics and Child Health, Singapore, Immediate Past President, Singapore Paediatric Society, Head of Paediatrics and A/Prof of Paediatrics, Yong Loo Lin School of Medicine, NUS, Senior Consultant and Head of Paediatric Pulmonology & Sleep, Dept of Paediatrics, NUH 3. A/Prof Anne Goh - President of Singapore Pediatric Society, Department of Paediatrics, Allergy Service, Head & Senior Consultant, KK Women’s and Children’s Hospital