收到这样一封邮件

白孔雀

收到这样一份邮件，用有道翻译翻译了一下，也不记得是否是过去向他们咨询过，还是他们从哪里得到了我的邮箱地址，不知道这些资讯是否是真的？白癜风基金会这个机构究竟是什么样的一个机构。如果有没有身在美国的战友，可以试一试。求教万能的战友们。 Hello Guo, Welcome to the new edition of VRF Newsletter, a monthly dose of news on the latest in vitiligo research, treatments and lifestyle — and everything around and in-between. For our inaugural newsletter, we're talking about: a) fake science and its effect on ... uhm... you, b) a legendary TV host Lee Thomas and his way out of the daily stress, andc) how to take part in research and make $50.

CLICKBAIT SCIENCE I’m not sure when it started in the mainstream media. Today, even the mostrespected news outlets are writing their headlines for clicks and articles for shares. Sometimes clever, often misleading, they catch our attention for a moment… but hey, who cares, right? Yet, these clickbait headlines, with ALL CAPS ON, have been a rare sight in scientific publicati** — until recently. Journals picked up the trend with titles like THE MICHAEL JACKSON AND WINNIE HARLOW EFFECT: IMPACT ON VITILIGO AWARENESS ON THE INTERNET. (I won't get into discussion of this pseudo-research of Google Trends here, but you can look it up on Pubmed.) Scientific fraud is nothing new, and f aux research hoodwinks not only dermatology journals. However , the scale of this fraud and its downstream effect on public health have been grossly underestimated. Online sellers of "anti-vitiligo oil", "v itiligo supplements" or "herbal mixtures" often cite deeply flawed, low quality, pseudo-research papers on vitiligo that fit their narrative. Whether intentionally or not, they put health of vitiligo patients at massive risk, often with severe c**equences. Next time you read about a 'miraculous product',  check out their sources. Here are five simple ways to spot fake research, courtesy of the Institute for Public Relati**. LIFESTYLE Feel like getting motivated or just looking for a feel-good news story? There's no better way to take a break from your day than with a fresh cup of coffee and a great TED talk from the most respectable name in vitiligo community. Watch this incredibly moving TED talk from the vitiligo spokesperson, 4x Emmy award winner, Fox2 TV entertainment guru, and our best friend, Lee Thomas. His extremely personal talk explores the uncomfortable feeling of vulnerability familiar to every person with vitiligo, and suggests the way out of a daily stress. Lee shares how he discovered a way to counter misunderstanding and fear around his appearance with engagement, dialogue -- and a smile. "Positivity is something worth fighting for, and the fight is not with others -- it's internal," says Lee. "If you want to make positive changes in your life, you have to c**istently be positive." ANNOUNCEMENT Vitiligo Research Foundation has teamed up with Sanguine, a provider of at-home clinical research services, to give you the opportunity to contribute to the development of new Vitiligo treatments from home and earn $50. Participation requires a simple blood donation, and a mobile medical professional will work around your schedule to meet you in the comfort of your home and perform the blood draw. Donating is easy and fast, and you willreceive $50 compensation as a Thank You for your time. You may qualify to participate if you: Are 18 years of age or over Have been diagnosed with non-segmental vitiligo for at least 3 months Live in the U.S. To learn more or sign up, visit website or call +1-818-804-2468 to speak with a research coordinator and see if you qualify. Clinical trials are coming soon! If you wish to get involved, please update your info to receive personalized alerts about clinical trials in your area. That's it for now. This is my another experiment in newsletter design and its contents. Whether you love it or you hate it, simply let me know by replying to this email. Until next time, Yan Valle CEO VR Foundation Special C**ultative Member of the UN ECOSOC EVENTS February 1: Vitiligo session at IMCAS Congress in Paris June 25: World VitiligoDay 2020 celebrati** in Belgrade, Serbia June 26-28: World Vitiligo Day conference in Bloomington, MN, USA Check out other events or add your postal code to receive personalized alerts about events nearby. BOOKSTORE A No-N**ense Guide To Vitiligo Drawing on mountains of recent research, as well as the timeless wisdom of traditional healers, the author dissects vitiligo and the uncomfortable truth that comes with it. He dashes from the root cause through symptoms and treatments to future lifestyle, so you can choose the proper therapy or correct the most common treatment mistakes. Paperback and  ebook from Amazon, iBooks or Google Play. A lso in Spanish: UnaGuia Pertinente Para El Vitiligo in paperback and ebook. Vitiligo: A Step-By-Step Guide To Diagnosis, Treatment And Prophylaxis A collection of ten proven clinical protocols for specialists regarding how to diagnose, treat and follow-up with vitiligo patients. Paperback and ebook. Vitiligo Research Foundation is a registered charity committed to research, education and care. But we can't do it without you! Whether a traditional currency, stock, Bitcoin or other crypto, your kind gift will be used to support our mission and advance vitiligo knowledge. Sent to: songheyannian@sohu.com Need to to update your address? No longer interested in Vitiligo News? Simply UNSUBSCRIBE in one click. Vitiligo Research Foundation 1, Penn Plaza #6205 New York, NY 10119 United States © VRF 2019 你好先生, 欢迎来到最新一期的VRF时事通讯，这是关于白癜风研究、治疗和生活方式以及周围和中间的一切的最新新闻。 在我们的第一份时事通讯中，我们谈论的是:a)虚假的科学及其对……嗯……你，b)传奇电视主持人李·托马斯和他摆脱日常压力的方法，c)如何参与研究并赚50美元。 CLICKBAIT科学 我不确定它是什么时候开始出现在主流媒体上的。今天，即使是最受关注的新闻媒体也在为点击量和股票文章撰写标题。有时它们很聪明，但往往具有误导性，它们会在一段时间内引起我们的注意……不过，谁在乎呢，对吧? 然而，直到最近，这些带有大写字母的“标题党”标题在科学出版物中还是罕见的。 《迈克尔·杰克逊和温妮·哈洛效应:互联网上对白癜风意识的影响》等期刊捕捉到了这一趋势。(我不会在这里讨论关于谷歌趋势的伪研究，但你可以在Pubmed上查找。) 科学欺诈并不是什么新鲜事，虚假的研究欺骗的不仅仅是皮肤病学杂志。然而，这种欺诈的规模及其对公共卫生的下游影响被严重低估。 “抗白癜风油”、“v型白癜风补品”或“草药混合物”的网上卖家经常引用存在严重缺陷、质量低下的关于白癜风的伪研究论文，这些论文符合他们的叙述。无论是有意还是无意，他们把白癜风患者的健康置于巨大的风险，往往有严重的后果。 下次当你读到一个“奇迹般的产品”，看看他们的来源。以下是公共关系研究所提供的五个识别虚假研究的简单方法。 生活方式 想要获得动力或只是寻找一个感觉良好的新闻故事?在白癜风社区最受人尊敬的名字里，没有比喝一杯新鲜的咖啡，做一场精彩的TED演讲更好的方式了。 看看这令人难以置信的感人的TED演讲，从白癜风的发言人，4次艾美奖得主，福克斯2电视娱乐专家，和我们最好的朋友，李托马斯。他极其个人化的演讲探讨了每个白癜风患者都熟悉的脆弱的不舒服感觉，并提出了摆脱日常压力的方法。 李分享了他是如何发现一种方法，通过参与、对话和微笑来消除人们对他外表的误解和恐惧。“积极是值得为之奋斗的东西，这种奋斗不是与他人的，而是内在的，”李说。“如果你想在生活中做出积极的改变，你必须始终保持积极。” 公告 白癜风研究基金会已经与一家提供家庭临床研究服务的公司Sanguine合作，让你有机会在家开发新的白癜风治疗方法，并获得50美元的奖励。 参与需要一个简单的献血，一个移动医疗专业人员将围绕你的时间表工作，在你舒适的家里满足你，并执行抽血。 捐赠是简单和快速的，你将收到50美元的补偿作为感谢你的时间。 如果你符合下列条件，你便有资格参加: 18岁或以上 是否已被诊断为非节段性白癜风至少3个月 住在美国。 要了解更多信息或注册，请访问网站或拨打+1-818-804-2468咨询研究协调员，看看你是否符合条件。 临床试验即将开始!如果您希望参与，请更新您的信息，以接收有关您所在地区临床试验的个性化警报。 就这些了。这是我在通讯设计及其内容的另一个实验。不管你喜欢还是讨厌它，只要回复我这封邮件就可以了。 直到下一次, 燕山谷 首席执行官虚拟现实基础 联合国经社理事会特别协商成员 事件 2月1日:巴黎IMCAS大会上的白癜风会议 6月25日:塞尔维亚贝尔格莱德庆祝2020年世界白癜风日 6月26-28日:世界白癜风日会议在美国明尼苏达州布卢明顿举行 查看其他事件或添加您的邮政编码来接收关于附近事件的个性化警报。 书店 一个严肃的白癜风指南 作者利用最近大量的研究，以及传统治疗师永恒的智慧，剖析了白癜风和随之而来的令人不安的真相。他从症状和治疗的根本原因，到未来的生活方式，所以你可以选择适当的治疗或纠正最常见的治疗错误。平装本和电子书来自亚马逊，iBooks或谷歌发挥。 西班牙语版:平装版和电子书版。 白癜风:一个循序渐进的指南，诊断，治疗和预防 关于如何诊断、治疗和随访白癜风患者的专家的10个已证实的临床方案。平装书和电子书。 白癜风研究基金会是一个注册慈善机构，致力于研究，教育和照顾。但是我们不能没有你! 无论是传统的货币，股票，比特币或其他加密，您的善意的礼物将用于支持我们的使命和促进白癜风的知识。 送至:songheyannian@sohu.com 需要更新您的地址吗? 对白癜风不再感兴趣? 只需一键取消订阅。 白癜风研究基金会 1、宾夕法尼亚广场6205号 纽约，NY 10119 美国 ©2019多联机

亦宁

对这个组织还不太了解，你们在当地的话也可以了解咨询下！

牛蛙

有在美国的朋友可以了解下

白孔雀

有能够翻墙的朋友，可以联系一下试试。也许有新的治疗方法。