7月6日至7日，由病痛挑战基金会主办的首届罕见病合作交流会在北京举办。两天内来自政府、医院、企业等多领域人士和90种罕见病、105家病友组织团体共聚一堂，与会人员600多人。包括库欣病和肢端肥大症在内的86种第二批罕见病目录申请表正式提交到了罕见病专家委员会。
Organized by the Beijing Illness Challenge Foundation (ICF), Rare Dissease Symposium on Collaboration and Communication was successfully held in Beijing on July 6-7th,. During this two days event, highly specialized participants coming from governmental policy making department, medical center of hospitals, phamaceutical companies and others were gathering together with 90 kinds of rare disease involved. There were 105 patient alliance organizations positively joined this event, and the number of registered participants exceeded 600.
CHPA are very pleased to announce that the Chinese expert committee on rare diseases officially accepted the application of Cushing’s Disease and Acromegaly with 84 more to belisted in the upcoming second batch of national rare disease catalogue.
携手北京病痛挑战公益基金会和豌豆Sir，皮质醇增多症联盟（CHPA）年初确定了推动库欣病进国家罕见病目录的申请意向，7月2号包括库欣病在内的86种第二批罕见病目录申请表正式提交到了罕见病专家委员会。
In collaboration with Beijing Illness Challenge Foundation (ICF) and the Pea Sir non-profit we-media, CHPA raised this policy promoting and rights advocacy activities at the beginning of year with aim to improve the social living environment in China for patients challengedby Cushing’s disease.
CHPA有幸受邀参加于7月6号在北京举办的首届罕见病合作交流会之论坛一环节的第二批国家罕见病目录相关方讨论，感谢我们两位病友代表，刚子和QueenBey出席并为大家直播论坛现场实况，希望不久之后能有期望的结果。
CHPA was honored to be invited to participate in the closed discussion session with the topic on all aspects of second batch of national rare disease catalogue on July 6, . We would like to sincerely thank QueenBey and Gangzi, the representative of CHPA and CAPA respectively, for making our efforts visible to higher management level. Hope it will move on smoothly with an outcome as we expected soon.
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皮质醇增多症联盟（China Hypercortisolism Patient Alliance，CHPA）是库欣综合征患者及其家属于8月份自发成立的民间公益组织，旨在普及皮质醇增多症国际国内前沿的诊疗知识进展，帮助组织患者配合实施临床研究，致力于提供互助互动的患者真实经验交流平台并收集汇总病家和医者双方经验从而推动该疾病的医患双方进步。
China Hypercortisolism Patient Alliance（CHPA） was founded in by a group of patients with Cushing’s Disease and their families. It is a non-profit organization that aims to provide information and support for optimal treatment and care for all patients with hypercortisolism and related issues. CHPA also provides access to informationon public education, clinical trials and effective treatments on pituitary-dependent disorders nationwide. It is guided by a Medical Advisory Board consisting of much experienced neurosurgeons andendocrinologists and it maintains a >
