我们是谁？

北京爱稀客肺动脉高压罕见病关爱中心（简称“爱稀客”）是中国唯一一个为肺动脉高压患者提供支持和帮助的民间公益组织。由全国的肺动脉高压患者、家属、医生及爱心人士于2009年组建，2011年，以“爱稀客文化中心”名义在全国开展肺动脉高压的医疗咨询、心理疏导、专业研究、慈善援助等工作。2013年，在北京市民政局正式注册，以倡导社会对肺动脉高压等隐性障碍社群的理解和关爱，维护其在医疗、教育、就业、出行等方面的平等权益，推动相关社会保障制度建设为己任。目前拥有全国30多个省市自治区共2000余名患者会员和50多名专业医生顾问。

Who we are?

iSEEK PH Hope Center (abbreviated as “iSEEK”) is the only NGO in China supporting people affected by pulmonary hypertension. In 2009, a group of patients, caregivers, medical professionals and volunteers proposed to establish an organization, and in 2011, iSEEK was finally established to provide medical consultancy, emotional support, research and charity assistance. Then registered in Beijing Civil Affairs Bureau in 2013, we aimed at raising public awareness about PH and the invisible disabled community as well as ending their isolation. We also dedicated ourselves to protect their equal rights in medical, education, employment and accessible environment, in the hope of promoting the development of the social security system. Now, iSEEK has more than 2000 patient members and 50 medical consultants all over China.

愿景：

中国肺动脉高压患者享有无歧视、无障碍的生活。

Vision:

May Chinese PH patients enjoy equal rights and live in an accessible environment.

使命：

提高肺动脉高压患者的生存质量，推动相关社会保障制度建设。

Mission:

To improve patient’s living standards and promote the development of the social security system.

内页二

工作目标

提高公众对肺动脉高压和隐性障碍的认知，预防人为的致病因素；

提高肺动脉高压医疗诊断水平，避免患者误诊、漏诊；

推动肺动脉高压纳入残障评定标准，相关药物纳入医保，维护患者合法权益；

推动医疗手段和药物研发进展，为患者提供更多治疗办法；

为患者提供心理疏导和慈善援助，帮助部分患者解决生存危机。

Objectives:

Raise social awareness about PH and invisible disability to avoid pathogenic factors;

Improve the early diagnosis and treatment of PH;

Advocate patient’s equal rights in medical insurance and the disabled protection laws;

Promote the development of medical research to find a cure;

Provide emotional support and charity assistance to patients in need.

项目介绍 ：

寻找蓝嘴唇

据统计，超过95%的人没有听说过肺动脉高压，已确诊的患者90%都遭遇过误诊。我们通过在校园、社区、商场等地进行“寻找蓝嘴唇”公益宣传活动，向公众普及肺动脉高压常识，让疑似患者早日确诊。

Programs:

Seeking Blue Lips

Evidence suggests that more than 95% of people have never heard of PH and more than 90% of patients have undergone misdiagnosis. So, we launched this awareness campaign in schools, communities and shopping centers to raise public attention to PH and early diagnosis.

蓝唇新生计划

爱稀客发起的中国第一个针对肺动脉高压患者的医疗救助项目。通过患者申请、医生推荐、专家顾问组审核的方式对已确诊的患者给予小额医疗援助，为身处困境的患者送去一份新生的希望。目前已有30名患者接受了本项目资助。

New Life Project

It is the first medical assistance program in China supporting people affected by PH, which can be applied by patients themselves or doctor’s recommendation. After the assessment of the advisory committee, medical allowances will be provided to patients for their treatment. Until now, 30 patients have benefited from this project.

蓝唇小课堂 全国性的肺动脉高压患者教育和医患交流项目，旨在诊室外搭建一个医生、患者及照顾者之间的交流平台，为患者送去最新的治疗信息，降低误诊和漏诊情况的发生。已在北京、广州、武汉、沈阳、成都、重庆等9个城市开展，邀请到北京阜外医院、北京朝阳医院、北京安贞医院、四川华西医院、沈阳军区总医院等多家医院的肺动脉高压专业诊疗中心的医生及患者、照顾者约300名参加。

PH Classroom

It is a face-to-face educational program among patients, caregivers and doctors. We hope to build up a friendly communication platform outside clinic that can regularly bring updated information to patients. This program have been entered into nine cities all over China, like Beijing, Guangzhou, Wuhan, Shenyang, Chengdu, Chongqing etc. More than 300 patients, caregivers and doctors attended our classes. Medical professionals from Beijing Fuwai hospital, Anzhen Hopsitial, Chaoyang hospital, West China Hospital, Sichuan University, China General Hospital of Shenyang Military Region volunteered in teaching and sharing experiences.

内页三

蓝唇徒步  2013年，已故患者家属梁建辉为了完成妻子的遗愿，从成都徒步2000公里到达拉萨，沿途向路人宣传肺动脉高压，呼吁将药物纳入医保。从此，爱稀客每年邀请上百名志愿者涂上蓝唇参加徒步健身活动，向公众宣传肺动脉高压，推动相关医疗政策的完善。

PHiking

In 2013, Mr. Jianhui Jiang hiked from Chengdu to Lhasa to fulfill her wife’s last wish to visit Tibet, who died of PH due to unaffordable medical costs. Along his adventurous trip, he raised public awareness about the disease and advocated for medical coverage to PH therapies. Since then, we held sports activities each year, attracting hundreds of people to participate in advocacy.

中国肺动脉高压患者生存状况调研 针对目前中国尚无完整的肺动脉高压患者流行病学和生存状况调查研究，爱稀客于2014年启动《中国肺动脉高压患者生存状况调研》，将与国家呼吸疾病临床医学研究中心、中国科学院心理研究所等科研机构合作，于2015年推出调研报告。该项目将对制定肺动脉高压医疗、社保政策提供依据。

Research

Since there is no accurate epidemiological and living conditions survey in China on PH, from 2014 we launched a research program to fill the blank. Cooperating with National Respiratory Disease Clinical Center and Institute of Psychology, Chinese Academy of Sciences, we will issue a report in 2005 to facilitate the policy-making on PH medical insurance policies.

外页一

蓝嘴唇&肺动脉高压  

肺动脉高压患者因为缺氧导致嘴唇呈蓝紫色，因此蓝嘴唇就是肺动脉高压患者的代称，也是国际公认的肺动脉高压宣传标志。

肺动脉高压是一种发生在肺部的高血压，随着患者肺部血管压力和阻力的持续性升高，最终可导致心脏及肺部衰竭。特发性肺动脉高压如不加治疗，中位生存期只有2.8年，死亡率甚至高于乳腺癌和结直肠癌。

Blue lips & Pulmonary Hypertension

Most PH patients have blue lips due to lack of oxygen, so blue lips became the symbol and recognition of pulmonary hypertension.

Pulmonary Hypertension is high blood pressure in the arteries of the lungs that can lead to right heart failure. If without treatment, the median survival period is 2.8 years, and the death toll are even higher than cancer.

爱稀客的寓意 

肺动脉高压是一种隐性而致命的心肺血管临床综合征。患者外表健全，但实际具有严重的行动障碍，早期症状不明显难以被确诊，故我们称之为“稀客”，英文“iseek”由此而来，意为具有隐性障碍的患者需要全社会寻找和关爱，志愿为“稀客”提供服务和帮助的爱心人士自称为“稀饭”，即稀客的fans。

Why iSEEK?

Pulmonary Hypertension is an invisible and fatal disease that hard to be diagnosed, and most patients look good but having great difficulty in physical exercises. iSEEK is to call for public understanding and support to this rare and invisible disabled community.