Guest Speakers
Guest Speakers
Participating Organizations
Participatants
Media
| TIME | THEME | |
|---|---|---|
|
8月22日 09:00-12:30 |
Opening Ceremony (Chinese) |
1.Opening Performance |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
2.Opening Remarks |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
3.The Development of Rare Disease in China |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
4.The Diagnosis and Treatment of Rare Diseases in China |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
5.The Value of Patient-Centerness in Rare Diseases |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
6.The Imprtance of Indigenous Innovation |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
7.The Progress of the Research on the Security System of Rare Disease Drugs |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
8.Rare Disease Medical Support Project Multi-Party Co-Payment Initiative |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
9.Round Table: Innovative Payment Model for Rare Disease Medical Insurance |
|
09:00-12:30 |
Opening Ceremony (Chinese) |
10.Round Table: Challenges and Opportunities for the Implementation of Rare Disease Policies |
|
14:00-16:30 |
Forum 1: Top-Level Design of Rare Disease Medical Social Security Policy (Chinese) |
1.Rare Disease Payment Innovation and Risk-Sharing |
|
14:00-16:30 |
Forum 1: Top-Level Design of Rare Disease Medical Social Security Policy (Chinese) |
2.Exploration of a Sustainable Social Security System for Rare Diseases in Jiangsu Province |
|
14:00-16:30 |
Forum 1: Top-Level Design of Rare Disease Medical Social Security Policy (Chinese) |
3.Multi-Level Co-Payment for Rare Diseases in Shanxi Province |
|
14:00-16:30 |
Forum 1: Top-Level Design of Rare Disease Medical Social Security Policy (Chinese) |
4.Interpretation of Rare Disease Policy in Zhejiang Province |
|
14:00-16:30 |
Forum 1: Top-Level Design of Rare Disease Medical Social Security Policy (Chinese) |
5.Comprehensive Survey on Rare Disease in China: The Status-Quo and Challenges of Social Security System for Rare Diseases |
|
14:00-16:30 |
Forum 1: Top-Level Design of Rare Disease Medical Social Security Policy (Chinese) |
6.Round Table: Top-Level Design of Rare Disease Medical Social Security Policy |
|
14:00-16:30 |
Forum 2: Development and Trends of Orphan Drug Innovation (Chinese) |
1.Economic Evaluation and Budget Impact Analysis of Drug Innovation Life-Cycle |
|
14:00-16:30 |
Forum 2: Development and Trends of Orphan Drug Innovation (Chinese) |
2.The Status-Quo of Rare Disease Drug Innovation |
|
14:00-16:30 |
Forum 2: Development and Trends of Orphan Drug Innovation (Chinese) |
3.Global Experience on Rare Disease Drug Innovation for Children |
|
14:00-16:30 |
Forum 2: Development and Trends of Orphan Drug Innovation (Chinese) |
4.The Experience of Chinese Patient Organization Participating in Drug R&D |
|
14:00-16:30 |
Forum 2: Development and Trends of Orphan Drug Innovation (Chinese) |
5.Innovative Model of Rare Disease Drug Import |
|
14:00-16:30 |
Forum 2: Development and Trends of Orphan Drug Innovation (Chinese) |
6.Round Table: Development and Trends of Orphan Drug Innovation |
|
14:00-16:30 |
Forum 3: International Forum of Rare Disease Patient Organizations (Chinese/English) |
1.How Rare Disease Patient Organizations Influence Drug Development and Access |
|
14:00-16:30 |
Forum 3: International Forum of Rare Disease Patient Organizations (Chinese/English) |
2.The Changing Role of Rare Disease Organizations in Clinical Trials: Using RDCRN as an Example |
|
14:00-16:30 |
Forum 3: International Forum of Rare Disease Patient Organizations (Chinese/English) |
3.Empowering Patients, Supporting Nonprofit Organizations: How the National Organization for Rare Disorders Connects Patients, Researchers and Industr |
|
14:00-16:30 |
Forum 3: International Forum of Rare Disease Patient Organizations (Chinese/English) |
4.Patient-Centered Approaches to Clinical Trial Participation |
|
14:00-16:30 |
Forum 3: International Forum of Rare Disease Patient Organizations (Chinese/English) |
5.International Collaboration of Patient Organizations |
|
14:00-16:30 |
Forum 3: International Forum of Rare Disease Patient Organizations (Chinese/English) |
6.The Impact of COVID-19 on Rare Disease Patient Organizations |
|
18:00-19:30 |
「Rare Live」- 2020 Global Charity Show (Chinese/English) |
「Rare Live」- 2020 Global Charity Show |
|
8月23日 09:30-11:50 |
Forum 4: Rare Diseases Multi-party Co-payment Social Security Model (Chinese) |
1.Reflect on Rare Disease Medical Insurance |
|
09:30-11:50 |
Forum 4: Rare Diseases Multi-party Co-payment Social Security Model (Chinese) |
2.Global Experience on Innovative Payment Multi-Party Co-Paymentand for Rare Diseases |
|
09:30-11:50 |
Forum 4: Rare Diseases Multi-party Co-payment Social Security Model (Chinese) |
3.The Living Status and Social Security of Ultra-Rare Disease Patients |
|
09:30-11:50 |
Forum 4: Rare Diseases Multi-party Co-payment Social Security Model (Chinese) |
4.Multi-Channel Financing of Rare Disease Medical Expenses |
|
09:30-11:50 |
Forum 4: Rare Diseases Multi-party Co-payment Social Security Model (Chinese) |
5.Rare Disease Medical Aid and Commercial Medical Insurance Supplement in the City of Foshan |
|
09:30-11:50 |
Forum 4: Rare Diseases Multi-party Co-payment Social Security Model (Chinese) |
6.Round Table: Rare Diseases Multi-Party Co-Payment Social Security Model |
|
09:30-11:50 |
Forum 5: Patient participation in Orphan Drug R&D and Import (Chinese) |
1.Patient-Centered Clinical Trials: Decentralized Clinical Trials |
|
09:30-11:50 |
Forum 5: Patient participation in Orphan Drug R&D and Import (Chinese) |
2.Ethics of Patient Paticipating in Clinical Trials |
|
09:30-11:50 |
Forum 5: Patient participation in Orphan Drug R&D and Import (Chinese) |
3.The Experience and Challenges of Chinese Patient Organizations Paticipating in Clinical Trials |
|
09:30-11:50 |
Forum 5: Patient participation in Orphan Drug R&D and Import (Chinese) |
Real-World Data in Rare Diseases |
|
09:30-11:50 |
Forum 5: Patient participation in Orphan Drug R&D and Import (Chinese) |
5.The Status-Quo and Challenges of Rare Disease Approval in China |
|
09:30-11:50 |
Forum 5: Patient participation in Orphan Drug R&D and Import (Chinese) |
6.Round Table: Patient Participation in Orphan Drug R&D and Import |
|
09:30-11:50 |
Forum 6: Rare Diseases In-vitro Fertilization Development (Chinese) |
1.Rare Diseases In-vitro Fertilization in China |
|
09:30-11:50 |
Forum 6: Rare Diseases In-vitro Fertilization Development (Chinese) |
2.Rare Diseases In-vitro Fertilization Policies in China |
|
09:30-11:50 |
Forum 6: Rare Diseases In-vitro Fertilization Development (Chinese) |
3.Reproduction of Rare Disease Patients: Ethics and Genetic Counseling |
|
09:30-11:50 |
Forum 6: Rare Diseases In-vitro Fertilization Development (Chinese) |
4.Reproduction of Rare Disease Patients: Medical Professionals Perspectives |
|
09:30-11:50 |
Forum 6: Rare Diseases In-vitro Fertilization Development (Chinese) |
5.Prenatal Diagnosis and Reproductive Ethics |
|
09:30-11:50 |
Forum 6: Rare Diseases In-vitro Fertilization Development (Chinese) |
6.Round Table: Rare Diseases In-Vitro Fertilization Development |
|
14:00-17:00 |
Forum 7: Diagnosis, Treatment and Social Security of Lysosomal Storage Diseases (Chinese) |
1.The Living Status of Patients with LSDs |
|
14:00-17:00 |
Forum 7: Diagnosis, Treatment and Social Security of Lysosomal Storage Diseases (Chinese) |
2.Social Security Model of High Value Orphan Drugs |
|
14:00-17:00 |
Forum 7: Diagnosis, Treatment and Social Security of Lysosomal Storage Diseases (Chinese) |
3.LSDs' Treatment |
|
14:00-17:00 |
Forum 7: Diagnosis, Treatment and Social Security of Lysosomal Storage Diseases (Chinese) |
4.Global Experience of LSDs' Treatment |
|
14:00-17:00 |
Forum 7: Diagnosis, Treatment and Social Security of Lysosomal Storage Diseases (Chinese) |
5.The Development of LSDs Patient Organizations |
|
14:00-17:00 |
Forum 7: Diagnosis, Treatment and Social Security of Lysosomal Storage Diseases (Chinese) |
6.Round Table: Diagnosis, Treatment and Social Security of LSDs |
|
14:00-17:00 |
Forum 8: ATTR-PN’s Treatment and Management (Chinese) |
1.Expert Consensus on the Treatment of ATTR-PN |
|
14:00-17:00 |
Forum 8: ATTR-PN’s Treatment and Management (Chinese) |
2.Diagnosis and Management of ATTR-PN |
|
14:00-17:00 |
Forum 8: ATTR-PN’s Treatment and Management (Chinese) |
3.Global Experience and Development of ATTR-PN Patient Organizations |
|
14:00-17:00 |
Forum 8: ATTR-PN’s Treatment and Management (Chinese) |
4.Closing Remarks |
|
14:00-17:00 |
Forum 9: Fundraising and Sustainability of Rare Disease Patient Organizations (Chinese) |
1.Fundraising Channels and Methods for Patient Organizations |
|
14:00-17:00 |
Forum 9: Fundraising and Sustainability of Rare Disease Patient Organizations (Chinese) |
2.Working with Foundations |
|
14:00-17:00 |
Forum 9: Fundraising and Sustainability of Rare Disease Patient Organizations (Chinese) |
3.No More Pity, Raising Funds with Joy |
|
14:00-17:00 |
Forum 9: Fundraising and Sustainability of Rare Disease Patient Organizations (Chinese) |
4.Impact of COVID-19 on the External Collaboration of Patient Organizations |
|
14:00-17:00 |
Forum 9: Fundraising and Sustainability of Rare Disease Patient Organizations (Chinese) |
5.Public Fundraising of Rare Disease Patient Organizations |
|
14:00-17:00 |
Forum 9: Fundraising and Sustainability of Rare Disease Patient Organizations (Chinese) |
6.Managing Your Donors |
|
14:00-17:00 |
Forum 9: Fundraising and Sustainability of Rare Disease Patient Organizations (Chinese) |
7.Round Table: Fundraising and Sustainability of Rare Disease Patient Organizations |
|
14:00-17:00 |
Forum 10: MDT of Rare Bone Diseases (Chinese) |
1.Anesthesia in Surgery of Rare Bone Diseases |
|
14:00-17:00 |
Forum 10: MDT of Rare Bone Diseases (Chinese) |
2.Translational Medicine and Application of Osteogenesis Imperfecta |
|
14:00-17:00 |
Forum 10: MDT of Rare Bone Diseases (Chinese) |
3.Surgical Treatment of Osteogenesis Imperfecta |
|
14:00-17:00 |
Forum 10: MDT of Rare Bone Diseases (Chinese) |
4.Clinical Identification of Hereditary Bone Biseases |
|
14:00-17:00 |
Forum 10: MDT of Rare Bone Diseases (Chinese) |
5.Diagnosis and Treatment of Children with Metabolic Bone Diseases |
|
14:00-17:00 |
Forum 10: MDT of Rare Bone Diseases (Chinese) |
6.Hypophosphatemic Rickets |
|
14:00-17:00 |
Forum 10: MDT of Rare Bone Diseases (Chinese) |
7.Treatment of Children with Hypophosphatemic Rickets |
|
14:00-17:00 |
Forum 10: MDT of Rare Bone Diseases (Chinese) |
8.Social Work Intervention for Patients with Rare Diseases and Their Families under MDT Model |
|
14:00-17:00 |
Forum 11: Holistic Approach of Rare Diseases (Chinese) |
1.Italian Experience of the Rehabilitation of Children with Osteogenesis Imperfecta |
|
14:00-17:00 |
Forum 11: Holistic Approach of Rare Diseases (Chinese) |
2.Application of Hydrotherapy in Rare Bone Diseases and Neuromuscular Diseases |
|
14:00-17:00 |
Forum 11: Holistic Approach of Rare Diseases (Chinese) |
3.Application of Comprehensive Rehabilitation in Precision Medicine of Bone Dysplasia |
|
14:00-17:00 |
Forum 11: Holistic Approach of Rare Diseases (Chinese) |
4.Exercise Rehabilitation of Rare Bone Diseases: Using Children with OI as an Example |
|
14:00-17:00 |
Forum 11: Holistic Approach of Rare Diseases (Chinese) |
5.Psychological Support Strategies for Children with Rare Diseases and Their Parents |
