09:30-11:50
Forum 6: Rare Diseases In-vitro Fertilization Development (Chinese)
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
Forum 5: Patient participation in Orphan Drug R&D and Import (Chinese)
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
Forum 4: Rare Diseases Multi-party Co-payment Social Security Model (Chinese)
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
Forum 7: Diagnosis, Treatment and Social Security of Lysosomal Storage Diseases (Chinese)
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
Forum 9: Fundraising and Sustainability of Rare Disease Patient Organizations (Chinese)
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
Forum 8: ATTR-PN’s Treatment and Management (Chinese)
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
Forum 10: MDT of Rare Bone Diseases (Chinese)
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
Forum 11: Holistic Approach of Rare Diseases (Chinese)
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