瓷娃娃關懷協會的目標
1樓：江湖做任務
1、開展成骨不全症等罕見疾病知識宣傳教育。
2、開展疾病群體及家庭的救助工作。
3、倡導社會對罕見疾病群體的關愛。
4、推動患者醫療、教育、就業的可及性。
5、建立罕見疾病患者和家屬的交流、互助網路。
6、為患者及其家庭提供法律援助。
7、開展罕見疾病及人群的調查和研究。
8、推動**在罕見疾病領域的政策出臺。
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
8. to advocate policy support for rare disease patients