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2022.04.12Optimising and Improving Access Mechanism for Orphan Drugs (CHI)
The precedent cases in recent years have shown that accelerating the inclusion of orphan drugs in the HA Drug Formulary and Safety Net is feasible. Therefore, RDHK hopes that the Government and the authorities concerned will learn from the successful experience and consider adopting the seven measures recommended below to optimise and regularise the access mechanism for orphan drugs.
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2021.09.22Submission for the 2021 Policy Address
Since the current-term Government took office, new measures on rare diseases have been proposed in every policy address, including increasing the Safety Net support for orphan drugs, optimizing the Safety Net means test mechanism, establishing patient database, conducting public education, increasing manpower, supporting scientific research and clinical research......
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2021.08.29醫院管理局「智友站」公眾教育成效調查（2021）
政府在《2019 施政報告》宣布加強罕病的公眾教育，並建議透過醫院管理局轄下「智友站」在內的資訊平台，廣泛提供與罕見疾病有關的資訊，提升醫護專業及公眾對各類疾病的認知和理解。
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有見及此，罕盟於2021年5月15日至6月9日期間進行問卷調查，旨在評估「智友站」在提升大眾對特定疾病認知的成效，並探討可行的改善方案。