北京协和医院罕见病临床思维与多学科诊疗方案集（2023年版）
北京协和医院罕见病临床思维与多学科诊疗方案集（2023年版）
2023年版沿用2021年版的主体风格，并继续完善和提升，全部病例更新，专家分析提升深度。本书是中国聚焦于罕见病诊疗和多学科会诊的病例集，依托北京协和医院罕见病团队和疑难病会诊中心的资源，汇集北京协和医院各个科室的智慧，突出病种齐全，病例资料完整，特别细化专家对多学科会诊的价值和思路的分析。本版共计42个经典病例，涵盖罕见病更多的种类，增加不同学科专家分析，为罕见病患者提供从诊断到治疗的全方位服务，书籍的出版也更加有利于全国各大...
2023年版沿用2021年版的主体风格，并继续完善和提升，全部病例更新，专家分析提升深度。本书是中国聚焦于罕见病诊疗和多学科会诊的病例集，依托北京协和医院罕见病团队和疑难病会诊中心的资源，汇集北京协和医院各个科室的智慧，突出病种齐全，病例资料完整，特别细化专家对多学科会诊的价值和思路的分析。本版共计42个经典病例，涵盖罕见病更多的种类，增加不同学科专家分析，为罕见病患者提供从诊断到治疗的全方位服务，书籍的出版也更加有利于全国各大中小医院，进一步提高罕见病的诊疗水平，为罕见病患者谋求福音。
心内科主任医师、教授、博士生导师。北京协和医院院长。国家重点研发计划"罕见病临床队列研究"项目负责人，中国研究型医院学会罕见病分会会长，国家卫生健康委员会罕见病诊疗与保障专家委员会副主任委员兼任办公室主任。中华医学会常务理事，内科学分会副主委，临床药学分会副主委，北京医学会临床药学分会主委，心血管病学分会副主委。
范思远 关鸿志
家族性慢性脑膜炎？原来是转甲状腺素蛋白淀粉样变性/ 9
范思远关鸿志
IGHMBP2 基因缺陷致遗传性运动感觉周围神经病/ 16
赵心悦戴毅
与时间赛跑的生命接力 /24
杨辰韩冰
两难的抉择/ 31
杨辰韩冰
“意外”的肺结节/ 39
张路李剑
咯血的噩梦 /46
沈恺妮李剑
党的二十大报告强调“把保障人民健康放在优先发展的战略位置”。人民健康是实现中国式现代化的应有之义。自党的十八大以来，党和国家全面布局罕见病诊疗和研究，高度重视罕见病用药保障和重大疾病防控工作，实现了一系列零的突破。2018 年，具有里程碑意义的《中国第一批罕见病目录》正式发布。2019 年，国家卫生健康委员会成立全国罕见病诊疗协作网，罕见病三级防控体系基本形成。
作为全国罕见病诊疗协作网中唯一的国家级牵头医院，北京协和医院充分依托诊疗协作网，通过采取“一站式”救治方案，努力破解罕见病诊疗难问题。自2019 年2 月协和罕见病多学科诊疗平台建立以来，4 年里的每个周四中午，在门诊楼的疑难病会诊中心，多名医学专家集聚于此，通过罕见病多学科会诊，争取最大限度减少患者误诊误治，缩短等待时间，增加治疗方案的可选择性，避免了不停转诊、重复检查给患者家庭带来的负担，让罕见病患者有希望。这是对协和百年多学科协作优良传统的传承弘扬，更是协和在新征程中坚守初心、勇担使命的生动的医疗实践。
Shipping Overview:
• Shipping: Standard Domestic Shipping within the United States charges USD 4.99. Standard International Shipping from United Kingdom, Germany and Japan to the United States charges 14.99.
• Order Processing: Please allow 1-2 business days for order processing and preparation before shipment.
• Domestic Shipping: Orders within the U.S. are shipped via USPS or FedEx, depending on the origin of the product. The average transit time is 3-7 business days.
• International Shipping: Currently, we only ship within the USA.
• Tracking Information: Every order is trackable. You will receive a tracking number once your order has been shipped. Products may be shipped from various global fulfillment centers.
Shipping Delays:
Please note that shipping times may vary due to factors beyond our control, such as weather conditions, natural disasters, or peak holiday periods. While we strive to ensure timely delivery, the exact arrival time cannot be guaranteed and is managed by the shipping carrier.
Shipping Options:
-
Standard Delivery: Most orders are shipped within 3-7 business days. Larger items may utilize LTL shipping for safe handling.
-
Handling Time: We handle shipments on business days (Monday - Friday), with a preparation time of 1-2 days.
-
Additional Charges: Some items require additional shipping charges due to their size, weight, or special handling. These charges are specified on the product pages and are not eligible for shipping discounts.
-
Exclusions: Gift cards, packaging, taxes, and prior purchases do not count toward the minimum purchase requirement for free shipping. This offer is valid only for shipments to U.S. addresses, including Puerto Rico.
Delivery Details:
-
Estimates: Standard shipping within the US typically takes 3-7 business days. These are estimates and not guarantees.
-
Shipping Restrictions: We ship to all 50 states, Washington, DC, U.S. territories, and APO/FPO/DPO addresses. Shipping options vary based on the delivery address.
-
Remote Areas: Shipments to remote areas may incur additional charges or require pickup from a nearby shipping partner’s location.
Shipping Confirmation:
You will receive a shipping confirmation email with a tracking number as soon as your order is dispatched. If you do not receive this email immediately, please be assured that your items will arrive within the estimated delivery window provided at checkout.
Order Modifications:
If you need to cancel or modify your order, please contact our customer support immediately.
Issues with Delivery:
If your order shows as delivered but you have not received it, please contact the shipping carrier directly to resolve the issue. For persistent problems, contact our customer service at cs@everymarket.com.
Customer Support:
Our team is available 24/7 to assist you with any questions or concerns regarding your order. We are committed to ensuring a smooth shopping experience.
Return & Refund Policy Overview
Please review our return and refund policies below to ensure a smooth transaction process.
Return Policy
-
Duration: You have 30 days from receiving your item to initiate a return.
-
Condition: Items must be unworn, unwashed, with original tags and packaging intact.
-
Shipping Costs: Customers are responsible for return shipping costs.
-
Packaging: Ensure returned items are well-packaged to avoid damage during transit.
-
Tracking: Use a trackable and insured shipping method as we are not liable for items lost or damaged on return.
-
Initiating a Return: Contact us at cs@everymarket.com to start your return. We will provide a return shipping label and instructions upon approval. Returns without prior approval will not be accepted.
How to Return
-
Method: Returns must be sent back by mail to the address provided in the return instructions.
Return Label
-
Defective Products: Return labels are provided for defective items.
-
Non-Defective Returns: Customers are responsible for obtaining their return shipping label.
Product Conditions for Return
-
Eligible Products: Returns are only accepted for items in new condition.
Nonreturnable Items
Certain items are not eligible for return:
-
Electronic devices after 30 days (e.g., computers, laptops, Kindles)
-
Gift cards, prepaid game cards
-
Perishable goods, live insects, some jewelry, some health and personal care items
-
Customized or personalized products
-
Items with special shipping restrictions
Refund Policy
-
Window: Eligible products may be returned within 30 days of delivery for a refund.
-
Refund Method: Refunds are processed to the original payment method or as store credit for items purchased with gift cards.
-
Processing Time: Refunds are processed within 3-5 business days after we receive the return; please allow additional time for shipping and bank processing.
Claims
Inspect your order upon arrival and report any defects, damages, or incorrect items immediately to allow us to address the issue. For claims, contact our support team with details of the issue.
Exchange Policy
For the quickest service, return your original item and place a new order for the desired product once your return is accepted.
Return Address
EveryMarket Customer Service 2101 E Terra Ln, O'Fallon, MO 63366
Customer Support
Available 24/7 for any questions or assistance needed:
-
Phone: +1 636-312-5925
-
Email: cs@everymarket.com
2023年版沿用2021年版的主体风格，并继续完善和提升，全部病例更新，专家分析提升深度。本书是中国聚焦于罕见病诊疗和多学科会诊的病例集，依托北京协和医院罕见病团队和疑难病会诊中心的资源，汇集北京协和医院各个科室的智慧，突出病种齐全，病例资料完整，特别细化专家对多学科会诊的价值和思路的分析。本版共计42个经典病例，涵盖罕见病更多的种类，增加不同学科专家分析，为罕见病患者提供从诊断到治疗的全方位服务，书籍的出版也更加有利于全国各大中小医院，进一步提高罕见病的诊疗水平，为罕见病患者谋求福音。
心内科主任医师、教授、博士生导师。北京协和医院院长。国家重点研发计划"罕见病临床队列研究"项目负责人，中国研究型医院学会罕见病分会会长，国家卫生健康委员会罕见病诊疗与保障专家委员会副主任委员兼任办公室主任。中华医学会常务理事，内科学分会副主委，临床药学分会副主委，北京医学会临床药学分会主委，心血管病学分会副主委。
范思远 关鸿志
家族性慢性脑膜炎？原来是转甲状腺素蛋白淀粉样变性/ 9
范思远关鸿志
IGHMBP2 基因缺陷致遗传性运动感觉周围神经病/ 16
赵心悦戴毅
与时间赛跑的生命接力 /24
杨辰韩冰
两难的抉择/ 31
杨辰韩冰
“意外”的肺结节/ 39
张路李剑
咯血的噩梦 /46
沈恺妮李剑
党的二十大报告强调“把保障人民健康放在优先发展的战略位置”。人民健康是实现中国式现代化的应有之义。自党的十八大以来，党和国家全面布局罕见病诊疗和研究，高度重视罕见病用药保障和重大疾病防控工作，实现了一系列零的突破。2018 年，具有里程碑意义的《中国第一批罕见病目录》正式发布。2019 年，国家卫生健康委员会成立全国罕见病诊疗协作网，罕见病三级防控体系基本形成。
作为全国罕见病诊疗协作网中唯一的国家级牵头医院，北京协和医院充分依托诊疗协作网，通过采取“一站式”救治方案，努力破解罕见病诊疗难问题。自2019 年2 月协和罕见病多学科诊疗平台建立以来，4 年里的每个周四中午，在门诊楼的疑难病会诊中心，多名医学专家集聚于此，通过罕见病多学科会诊，争取最大限度减少患者误诊误治，缩短等待时间，增加治疗方案的可选择性，避免了不停转诊、重复检查给患者家庭带来的负担，让罕见病患者有希望。这是对协和百年多学科协作优良传统的传承弘扬，更是协和在新征程中坚守初心、勇担使命的生动的医疗实践。
Shipping Overview:
• Shipping: Standard Domestic Shipping within the United States charges USD 4.99. Standard International Shipping from United Kingdom, Germany and Japan to the United States charges 14.99.
• Order Processing: Please allow 1-2 business days for order processing and preparation before shipment.
• Domestic Shipping: Orders within the U.S. are shipped via USPS or FedEx, depending on the origin of the product. The average transit time is 3-7 business days.
• International Shipping: Currently, we only ship within the USA.
• Tracking Information: Every order is trackable. You will receive a tracking number once your order has been shipped. Products may be shipped from various global fulfillment centers.
Shipping Delays:
Please note that shipping times may vary due to factors beyond our control, such as weather conditions, natural disasters, or peak holiday periods. While we strive to ensure timely delivery, the exact arrival time cannot be guaranteed and is managed by the shipping carrier.
Shipping Options:
-
Standard Delivery: Most orders are shipped within 3-7 business days. Larger items may utilize LTL shipping for safe handling.
-
Handling Time: We handle shipments on business days (Monday - Friday), with a preparation time of 1-2 days.
-
Additional Charges: Some items require additional shipping charges due to their size, weight, or special handling. These charges are specified on the product pages and are not eligible for shipping discounts.
-
Exclusions: Gift cards, packaging, taxes, and prior purchases do not count toward the minimum purchase requirement for free shipping. This offer is valid only for shipments to U.S. addresses, including Puerto Rico.
Delivery Details:
-
Estimates: Standard shipping within the US typically takes 3-7 business days. These are estimates and not guarantees.
-
Shipping Restrictions: We ship to all 50 states, Washington, DC, U.S. territories, and APO/FPO/DPO addresses. Shipping options vary based on the delivery address.
-
Remote Areas: Shipments to remote areas may incur additional charges or require pickup from a nearby shipping partner’s location.
Shipping Confirmation:
You will receive a shipping confirmation email with a tracking number as soon as your order is dispatched. If you do not receive this email immediately, please be assured that your items will arrive within the estimated delivery window provided at checkout.
Order Modifications:
If you need to cancel or modify your order, please contact our customer support immediately.
Issues with Delivery:
If your order shows as delivered but you have not received it, please contact the shipping carrier directly to resolve the issue. For persistent problems, contact our customer service at cs@everymarket.com.
Customer Support:
Our team is available 24/7 to assist you with any questions or concerns regarding your order. We are committed to ensuring a smooth shopping experience.
Return & Refund Policy Overview
Please review our return and refund policies below to ensure a smooth transaction process.
Return Policy
-
Duration: You have 30 days from receiving your item to initiate a return.
-
Condition: Items must be unworn, unwashed, with original tags and packaging intact.
-
Shipping Costs: Customers are responsible for return shipping costs.
-
Packaging: Ensure returned items are well-packaged to avoid damage during transit.
-
Tracking: Use a trackable and insured shipping method as we are not liable for items lost or damaged on return.
-
Initiating a Return: Contact us at cs@everymarket.com to start your return. We will provide a return shipping label and instructions upon approval. Returns without prior approval will not be accepted.
How to Return
-
Method: Returns must be sent back by mail to the address provided in the return instructions.
Return Label
-
Defective Products: Return labels are provided for defective items.
-
Non-Defective Returns: Customers are responsible for obtaining their return shipping label.
Product Conditions for Return
-
Eligible Products: Returns are only accepted for items in new condition.
Nonreturnable Items
Certain items are not eligible for return:
-
Electronic devices after 30 days (e.g., computers, laptops, Kindles)
-
Gift cards, prepaid game cards
-
Perishable goods, live insects, some jewelry, some health and personal care items
-
Customized or personalized products
-
Items with special shipping restrictions
Refund Policy
-
Window: Eligible products may be returned within 30 days of delivery for a refund.
-
Refund Method: Refunds are processed to the original payment method or as store credit for items purchased with gift cards.
-
Processing Time: Refunds are processed within 3-5 business days after we receive the return; please allow additional time for shipping and bank processing.
Claims
Inspect your order upon arrival and report any defects, damages, or incorrect items immediately to allow us to address the issue. For claims, contact our support team with details of the issue.
Exchange Policy
For the quickest service, return your original item and place a new order for the desired product once your return is accepted.
Return Address
EveryMarket Customer Service 2101 E Terra Ln, O'Fallon, MO 63366
Customer Support
Available 24/7 for any questions or assistance needed:
-
Phone: +1 636-312-5925
-
Email: cs@everymarket.com
Oops!
Sorry, it looks like some products are not available in selected quantity.