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