瓷娃娃关怀协会的目标

1、开展成骨不全症等罕见疾病知识宣传教育

2、开展疾病群体及家庭的救助工作

3、倡导社会对罕见疾病群体的关爱

4、推动患者医疗、教育、就业的可及性

5、建立罕见疾病患者和家属的交流、互助网络

6、为患者及其家庭提供法律援助

7、开展罕见疾病及人群的调查和研究

8、推动政府在罕见疾病领域的政策出台

Objectives:

1. To increase knowledge about OI and other rare diseases

2. To develop “Aid & Support” programs for the patients and their families

3. To raise social awareness of rare diseases

4. To improve the access of patients to medical treatment, education and employment

5. To build a social self-help network connecting patients and their families

6. To provide legal aid to the patients and their families

7. To implement Investigation&Research

8. To advocate policy support for rare disease patients