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首部AI资源手册发布 深圳市罕见病联动网络再拓圈

  • 2026-05-09 13:35:36
首部AI资源手册发布 深圳市罕见病联动网络再拓圈

2月27日,在国际罕见病日前夕,“深圳市罕见病综合保障服务项目进社区主题活动暨2026年深圳罕见病综合保障服务资源手册发布会”在龙岗街道党群服务中心举办,以“不止罕见”为主题,让社区居民感受到了一系列罕见病关怀举措的温暖与罕见病群体昂扬的生命力量。

▲活动现场

本次活动由深圳市医保局、深圳市民政局指导,“深圳惠民保”共保体、北京病痛挑战公益基金会、深圳市儿童医院及香港大学深圳医院联合主办,旨在推动罕见病保障服务深入基层,并发布最新版的资源导航手册。

 数据见证温度

深圳惠民保赔付罕见病患者超3700万元

慈善救助精准滴灌

近年来,以深圳为代表的地区积极响应国家对罕见病群体的高度重视,持续探索和完善罕见病综合保障服务体系,成效喜人。早在2024年6月,深圳市罕见病综合保障服务项目(以下简称“综合服务项目”)正式启动,为罕见病患者提供一站式慈善援助帮扶,多方拆解罕见病治疗费用,为患者减轻经济负担。

在活动当天,中国人寿深圳分公司党委委员、副总经理袁民首先介绍了深圳惠民保罕见病专属保障政策。他表示,深圳惠民保作为政府指导的普惠型商保,已连续三年参保人数突破600万,位居全省第一;针对罕见病群体,特设高值自费罕见病药品专项保障,2025年已将庞贝病、戈谢病、低磷性佝偻病等9种罕见病的10个药品纳入保障。目前,已累计为罕见病患者赔付超3700万元,保障水平居国内前列。在政府主导的基本医保和普惠商保之外,慈善力量发挥了重要的补充作用。“深圳经济特区建设者重大疾病关爱基金”已将国家公布的207种罕见病全部纳入保障范围,累计精准救助罕见病患者75人次,拨付救助资金175.51万元。

北京病痛挑战公益基金会社群服务项目主管孙雯则分享了“综合服务项目”落地近两年来的丰硕成果。一方面,项目依托两家定点医院,为患者家庭提供信息咨询、就诊指引、心理关怀等综合服务支持,解决患者就医的多角度难题,有效纾解患者家庭的心理压力;另一方面,透过基金会的“罕见病医疗援助工程深圳专项”,汇集社会关爱力量为罕见病患者提供多层次善款援助,目前已资助罕见病家庭超57万元,各类服务受益家庭逾2000人次。

工具赋能

AI动态手册+救助小程序

就医求助一键导航

在活动现场,多方代表共同发布了《深圳罕见病综合保障服务资源手册》。该手册接入腾讯ima智能工作台,将原本分散的政府医保政策、深圳惠民保理赔指引以及各类慈善救助项目,整合成了一套实时更新的就医导航。对于罕见病患者而言,这意味着扫码就能快速搞清楚去哪治、怎么报、找谁帮,有效降低了求助门槛

▲长按二维码加入知识
AI 秒问秒答,罕见病救助政策随时查

腾讯健康、腾讯SSV(可持续社会价值事业部)作为此次联合行动网络的核心成员,不仅助力构建这一数字化保障体系,更发挥连接优势,通过腾讯公益‘小红花’行动将公众的善意与线下的医疗救助无缝对接,让每一份对罕见病群体的关爱都能精准抵达。

▲手册发布

果说这份AI手册能够更好地为患者及家属提供医疗咨询服务,为进一步提升服务效率,腾讯医疗救助通小程序已于2026年2月24日正式发布。试点阶段,小程序与深圳市医保局、北京病痛挑战公益基金会合作,支持深圳市罕见病综合保障服务试点项目,为深圳罕见病病友提供就医记录快速提交和验真审核服务

点击图片体验腾讯医疗救助通
深圳罕见病就医记录一键提交、快速核验

活动当天,首批深圳市罕见病综合保障服务项目联合行动网络成员单位也集体亮相,包括深圳市红十字会、深圳市慈善会、腾讯SSV、腾讯健康、深圳市社会公益基金会、深圳市龙岗区儿童福利发展促进会等机构在内的社会力量进一步汇聚

▲成员单位获颁感谢函

现场嘉宾和居民,还通过小红花行为公益,为罕见病家庭送上一朵小红花,通过观看罕见病公益画展、小红花行为公益互动等多种形式支持罕见病公益。

▲腾讯公益小红花活动

深圳市儿童医院、香港大学深圳医院的多学科医疗团队,同现场患者及居民面对面解疑答惑,提供专业的诊疗咨询;儿童游戏工作坊,则让罕见病小朋友与其他小朋友一起欢度美好时光。

▲诊疗咨询现场

深圳市人大代表陈雄英表示,深圳正以“制度保障、慈善帮扶、科研攻坚”三项实举,践行“不放弃任何人”的承诺。广东省政协委员郭云霞指出,深圳湾实验室与公益基金会合作的“微光同行”计划,已在四大罕见病领域取得科研突破,展现了科技向善的力量。

▲罕见病综合保障服务捐赠通道

聚深圳微光,守护罕见生命

数字公益赋能和罕见病服务力量拓圈的背后,是汇聚各方努力的多层次保障服务体系。罕见病综合保障服务的“深圳模式”正在不断完善,用保障的深度、医疗的力度、慈善的温度,告诉每一个在这里遭遇罕见病的家庭:你们并不孤单,未来由深圳守护。

本文综合自:深圳医保、腾讯健康官方、腾讯技术公益

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  1. CONNECT:[ UseTime:0.000604s ] mysql:host=127.0.0.1;port=3306;dbname=c460;charset=utf8mb4
  2. SHOW FULL COLUMNS FROM `fenlei` [ RunTime:0.000925s ]
  3. SELECT * FROM `fenlei` WHERE `fid` = 0 [ RunTime:0.000378s ]
  4. SELECT * FROM `fenlei` WHERE `fid` = 63 [ RunTime:0.000299s ]
  5. SHOW FULL COLUMNS FROM `set` [ RunTime:0.000619s ]
  6. SELECT * FROM `set` [ RunTime:0.000242s ]
  7. SHOW FULL COLUMNS FROM `article` [ RunTime:0.000697s ]
  8. SELECT * FROM `article` WHERE `id` = 514924 LIMIT 1 [ RunTime:0.000533s ]
  9. UPDATE `article` SET `lasttime` = 1778459041 WHERE `id` = 514924 [ RunTime:0.003212s ]
  10. SELECT * FROM `fenlei` WHERE `id` = 64 LIMIT 1 [ RunTime:0.000251s ]
  11. SELECT * FROM `article` WHERE `id` < 514924 ORDER BY `id` DESC LIMIT 1 [ RunTime:0.000418s ]
  12. SELECT * FROM `article` WHERE `id` > 514924 ORDER BY `id` ASC LIMIT 1 [ RunTime:0.010239s ]
  13. SELECT * FROM `article` WHERE `id` < 514924 ORDER BY `id` DESC LIMIT 10 [ RunTime:0.001191s ]
  14. SELECT * FROM `article` WHERE `id` < 514924 ORDER BY `id` DESC LIMIT 10,10 [ RunTime:0.000918s ]
  15. SELECT * FROM `article` WHERE `id` < 514924 ORDER BY `id` DESC LIMIT 20,10 [ RunTime:0.001863s ]
0.092757s