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How families are defying rare disease | CNBC Full Documentary

家庭如何对抗罕见疾病 | CNBC完整纪录片

CNBC Cures: Defying Rare Disease

CNBC治愈：挑战罕见病

Last summer, my sister Becky approached me with an idea.

去年夏天，我妹妹贝琪向我提出了一个想法。

She wanted my help building a platform at CNBC to spotlight the 30 million Americans living with a rare disease.

她希望我帮忙在CNBC搭建一个平台，聚焦生活在罕见病中的3000万美国人。

Becky hoped that doing so would help give a voice to the millions of people that are often overlooked by the medical community … who suffer from diseases that most of us have never heard of.

贝琪希望这样做能够帮助那些经常被医学界忽视的数百万人发声……他们患有的疾病是我们大多数人从未听说过的。

Her vision was to create a space for

她的愿景是创造一个空间用于

that

那个

community — a space that connects people with the incredible work already being done by rare disease advocacy groups, and builds on it by also reaching CNBC's unique audience — an audience with the power and influence to help bring about change for rare disease patients and their families.

社区——一个将人们与罕见病倡导组织已经开展的卓越工作联系起来的空间，并通过接触CNBC的独特受众进一步扩展影响力——这个受众拥有帮助罕见病患者及其家庭带来改变的权力和影响力。

I was intimidated by the challenge. Not just because of the amount of work that I knew would be required to meet our launch deadline, but also because of the level of empathy, and sense of responsibility that I knew would be required to do it well. I wasn't sure if I would be up to the task.

我被这个挑战吓到了。不仅因为我知道为了赶上发布截止日期需要投入大量工作，还因为我意识到要出色完成任务所需要的同理心和责任感。我不确定自己是否能够胜任。

Thankfully, Becky and I weren't alone.

谢天谢地，贝琪和我不是独自一人。

Dozens of our colleagues rallied behind CNBC Cures. They dedicated their time and talents working on something that has inspired everyone connected to it.

我们的数十名同事齐聚CNBC Cures背后。他们投入时间和才华，致力于一件激励所有相关人员的事情。

And because of their efforts, CNBC Cures has seen some early success.

由于他们的努力，CNBC Cures已经取得了一些初步的成功。

There have been well over a dozen stories on our air highlighting the rare disease community since we launched on January 8.

自从我们于 1 月 8 日启动以来，我们的广播电台已经播出了十几篇重点介绍罕见病社区的报道。

Over 20,000 subscribers have signed up for the

超过20,000名订阅者已经注册了

CNBC Cures Newsletter

CNBC治愈通讯

, making it one of the fastest growing newsletters the network has ever launched.

，使其成为该网络有史以来增长最快的新闻通讯之一。

We've had thousands of listeners stream episodes of

我们已经有成千上万的听众收听节目的流媒体播放

The Path with Becky Quick

贝琪·奎克的路径

, the Cures podcast series we launched where Becky shares personal and emotional stories of people living with rare diseases.

，我们推出的Cures播客系列，贝琪在其中分享了罕见病患者个人和情感故事。

We're getting some traction on social media too, with Cures videos combining for 1 million views on Facebook, TikTok, Instagram and LinkedIn.

我们在社交媒体上也获得了一些关注，Cures视频在Facebook、TikTok、Instagram和LinkedIn上的观看量总计达到了100万。

Our first annual CNBC Cures Summit, a live event that saw Warren Buffett shaking hands with

我们的首届年度CNBC治愈峰会，这是一个沃伦·巴菲特亲自出席并握手的现场活动，

Boomer Esiason

布默·埃西亚森

and Regeneron CEO

和再生元首席执行官

Leonard Schleifer

伦纳德·施莱弗

, sold out not long after registration opened up. And the free livestream of the event had more than 8,000 views.

，注册开放后不久就售罄了。而且该活动的免费直播流媒体观看次数超过8000次。

On Thursday, we aired our one-hour documentary, 'CNBC Cures: Defying Rare Disease.' The special let Becky step out from behind the anchor desk to share her family's private

周四，我们播放了我们的一个小时的纪录片《CNBC治愈：挑战罕见病》。这部特别节目让贝琪从主播台后走出来，分享她家庭的私人故事。

battle with rare disease

与罕见疾病作斗争

, and open up about her daughter Kaylie's SYNGAP-1 diagnosis. Through her story and others like it, Becky revealed the stark reality of patients caught between groundbreaking scientific advances and the persistent gaps in funding, access, and support.

，公开谈论她女儿凯莉被诊断出患有SYNGAP-1基因突变的情况。通过她的故事以及类似的经历，贝琪揭示了患者面临的严峻现实：他们被困在突破性的科学进展与持续存在的资金、获取途径和支持的缺口之间。

In the two months since we've launched Cures, we've more consistently talked about the issues impacting the rare disease community than we have in the

自从我们两个月前推出Cures以来，我们比以往更持续地讨论了影响罕见病社区的问题。

two years

两年

prior.

之前。

It hasn't felt forced, and it hasn't been rushed. Because people care about the message.

它没有感到被迫，也没有被仓促行事。因为人们关心这个信息。

That speaks to the importance and the relevance of these stories.

这说明了这些故事的重要性和相关性。

What I've learned through this process is that nearly everyone knows someone that's impacted by a rare disease. And the issues we're discussing — from

我通过这个过程学到的是，几乎每个人都知道有人受到罕见疾病的影响。而我们正在讨论的问题——从

regulatory reform

监管改革

, to scientific innovation, and access to medicines — don't just matter to the rare disease community … they're issues that matter to all of us.

，对于科学创新和药品获取渠道——不仅对罕见病群体至关重要……它们是关乎我们所有人的议题。

They're the issues that will remain the driving force behind CNBC Cures, and the issues we'll use to frame the stories we bring you from this incredible community.

这些问题将是CNBC Cures背后的持续驱动力，也是我们将用来构建从这个非凡社区带给您的故事的框架。

But most importantly, over the last two months, we've heard a lot from from you, our viewers and readers. We've received hundreds of emails ... more than we've been able to respond to — though we're trying.

但是最重要的是，在过去的两个月里，我们从你们，我们的观众和读者那里听到了很多声音。我们收到了数百封电子邮件……比我们能够回复的还要多——尽管我们在努力。

You've shared your stories with us, and brought us into your lives. You've made us smarter, and more relevant, and you've affirmed that we're on the right path.

你们与我们分享了你们的故事，将我们带入了你们的生活。你们让我们更加明智，更加切合实际，而且你们肯定了我们正走在正确的道路上。

It's all the justification we need to know that this is an area that's worth investing in as a network.

这是我们需要知道的全部理由，证明这个领域作为网络投资是值得的。

Thank you for your continued support, and for your inspiration.

感谢您的持续支持和给予的灵感。

And keep following CNBC Cures, because we're just getting started.

继续关注CNBC Cures，因为我们才刚刚开始。

For more on CNBC Cures, check out

想了解更多关于CNBC Cures的信息，请查看

CNBC.com/cures

CNBC.com/cures

. To sign up for the newsletter,

要注册订阅新闻通讯，

click here

点击这里

. To check out the latest episode of 'The Path with Becky Quick,'

查看《贝琪·奎克的路径》最新一集，

click here

点击这里

.

。

Choose CNBC as your preferred source on Google and never miss a moment from the most trusted name in business news.

将CNBC设置为Google上的首选来源，不错过商业新闻最值得信赖的名字的任何时刻。