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我們是誰？

北京愛稀客肺動脈高壓罕見病關(guān)愛中心（簡稱“愛稀客”）是中國唯一一個為肺動脈高壓患者提供支持和幫助的民間公益組織。由全國的肺動脈高壓患者、家屬、醫(yī)生及愛心人士于2009年組建，2011年，以“愛稀客文化中心”名義在全國開展肺動脈高壓的醫(yī)療咨詢、心理疏導(dǎo)、專業(yè)研究、慈善援助等工作。2013年，在北京市民政局正式注冊，以倡導(dǎo)社會對肺動脈高壓等隱性障礙社群的理解和關(guān)愛，維護其在醫(yī)療、教育、就業(yè)、出行等方面的平等權(quán)益，推動相關(guān)社會保障制度建設(shè)為己任。目前擁有全國30多個省市自治區(qū)共2000余名患者會員和50多名專業(yè)醫(yī)生顧問。

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：

中國肺動脈高壓患者享有無歧視、無障礙的生活。

Vision:

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

使命：

提高肺動脈高壓患者的生存質(zhì)量，推動相關(guān)社會保障制度建設(shè)。

Mission:

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

內(nèi)頁二

工作目標

提高公眾對肺動脈高壓和隱性障礙的認知，預(yù)防人為的致病因素；

提高肺動脈高壓醫(yī)療診斷水平，避免患者誤診、漏診；

推動肺動脈高壓納入殘障評定標準，相關(guān)藥物納入醫(yī)保，維護患者合法權(quán)益；

推動醫(yī)療手段和藥物研發(fā)進展，為患者提供更多治療辦法；

為患者提供心理疏導(dǎo)和慈善援助，幫助部分患者解決生存危機。

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.

項目介紹 ：

尋找藍嘴唇

據(jù)統(tǒng)計，超過95%的人沒有聽說過肺動脈高壓，已確診的患者90%都遭遇過誤診。我們通過在校園、社區(qū)、商場等地進行“尋找藍嘴唇”公益宣傳活動，向公眾普及肺動脈高壓常識，讓疑似患者早日確診。

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.

藍唇新生計劃

愛稀客發(fā)起的中國第一個針對肺動脈高壓患者的醫(yī)療救助項目。通過患者申請、醫(yī)生推薦、專家顧問組審核的方式對已確診的患者給予小額醫(yī)療援助，為身處困境的患者送去一份新生的希望。目前已有30名患者接受了本項目資助。

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.

藍唇小課堂 全國性的肺動脈高壓患者教育和醫(yī)患交流項目，旨在診室外搭建一個醫(yī)生、患者及照顧者之間的交流平臺，為患者送去最新的治療信息，降低誤診和漏診情況的發(fā)生。已在北京、廣州、武漢、沈陽、成都、重慶等9個城市開展，邀請到北京阜外醫(yī)院、北京朝陽醫(yī)院、北京安貞醫(yī)院、四川華西醫(yī)院、沈陽軍區(qū)總醫(yī)院等多家醫(yī)院的肺動脈高壓專業(yè)診療中心的醫(yī)生及患者、照顧者約300名參加。

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.

內(nèi)頁三

藍唇徒步  2013年，已故患者家屬梁建輝為了完成妻子的遺愿，從成都徒步2000公里到達拉薩，沿途向路人宣傳肺動脈高壓，呼吁將藥物納入醫(yī)保。從此，愛稀客每年邀請上百名志愿者涂上藍唇參加徒步健身活動，向公眾宣傳肺動脈高壓，推動相關(guān)醫(yī)療政策的完善。

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.

中國肺動脈高壓患者生存狀況調(diào)研 針對目前中國尚無完整的肺動脈高壓患者流行病學(xué)和生存狀況調(diào)查研究，愛稀客于2014年啟動《中國肺動脈高壓患者生存狀況調(diào)研》，將與國家呼吸疾病臨床醫(yī)學(xué)研究中心、中國科學(xué)院心理研究所等科研機構(gòu)合作，于2015年推出調(diào)研報告。該項目將對制定肺動脈高壓醫(yī)療、社保政策提供依據(jù)。

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.

外頁一

藍嘴唇&肺動脈高壓  

肺動脈高壓患者因為缺氧導(dǎo)致嘴唇呈藍紫色，因此藍嘴唇就是肺動脈高壓患者的代稱，也是國際公認的肺動脈高壓宣傳標志。

肺動脈高壓是一種發(fā)生在肺部的高血壓，隨著患者肺部血管壓力和阻力的持續(xù)性升高，最終可導(dǎo)致心臟及肺部衰竭。特發(fā)性肺動脈高壓如不加治療，中位生存期只有2.8年，死亡率甚至高于乳腺癌和結(jié)直腸癌。

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.

愛稀客的寓意 

肺動脈高壓是一種隱性而致命的心肺血管臨床綜合征?；颊咄獗斫∪?，但實際具有嚴重的行動障礙，早期癥狀不明顯難以被確診，故我們稱之為“稀客”，英文“iseek”由此而來，意為具有隱性障礙的患者需要全社會尋找和關(guān)愛，志愿為“稀客”提供服務(wù)和幫助的愛心人士自稱為“稀飯”，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.