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第 11 屆年度 ECD 患者和家庭聚會 – 伯明翰 2026
埃爾德海姆-切斯特病全球聯盟宣布 2026 年患者和家屬聚會。
阿拉巴馬州伯明翰 — 埃德海姆-切斯特病全球聯盟 （ECDGA） 和 UAB 醫學院邀請患者、家屬、醫療保健專業人員和研究人員保存日期。
- 患者和家屬聚會 （PFG）：2026 年 4 月 29 日至 30 日
2026 年 4 月 29 日（星期三）
交流會：下午 3:00–下午 5:00
地點：Hilton at UAB Downtown
2026 年 4 月 30 日（星期四）
病友與家屬聚會：上午 8:00–下午 4:30
地點：阿拉巴馬大學伯明罕分校（University of Alabama at Birmingham）Marnix E. Heersink 會議中心
慶祝晚宴：下午 6:00–下午 8:00
地點：Hilton at UAB Downtown
本次活動將匯集全球埃爾德海姆-切斯特病界與領先的醫學專家，分享最新研究、臨床見解和社區資源。 與會者可以期待教育課程、與同行聯繫的機會以及新興治療和患者護理的最新信息。
有關酒店和節目亮點的更多詳細信息將在未來幾個月內發布。
議程
| Time | Allocated minutes (510 min total) | Presentation Subject Possibilities (Actual Titles to be Provided by Presenters) | Presenter | Session Description |
|---|---|---|---|---|
| 8:00 AM | 30 | Registration & Light Breakfast | ||
| 8:30 AM | 15 | Welcome to Birmingham & PFG Meeting | Gaurav Goyal, MD | Welcome to the 11th Annual Erdheim-Chester Disease International Conference! Introductions to Birmingham, UAB and the ECD Global Alliance. |
| 8:45 AM | 15 | Manifestations of histiocytosis in adults | Matthew Collin, MD, PhD | Learn about the difference types of adult histiocytic disorders. How are they different? How are they the same? What have we learned recently that makes us believe they are more alike than they once were. |
| 9:00 AM | 15 | Histiocytosis at the Cellular Level | Astrid van Halteren, PhD | This presentation will zoom into the different cell types which can be found in the bone marrow, blood and tissues of patients diagnosed with histiocytosis |
| 9:15 AM | 15 | ECD/Histio Treatment Options | Sam Reynolds, MD | ECD/Histio Treatment Options (Current & on the horizon) |
| 9:30 AM | 15 | Tagreted Therapy: The Good, the Bad, and the Unaffordable | Daniel Sokolowski, PharmD | Overview of targeted treatments for histiocytosis and management of their adverse effects. |
| 9:45 AM | 20 | Break | N/A | |
| 10:05 AM | 15 | Advancing treatment for histiocytic neurodegeneration through patient specific modeling | Nicole Coufal, MD, PhD | The importance of patient samples to the science, and the importance of pilot funding and where we hope to take it in the future. |
| 10:20 AM | 15 | What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment. | Carrie Lenneman, MD, MSCI | Discuss common medication used in treatment of ECD . Review potential cardiac side effects and management strategies of ECD treatment. |
| 10:35 AM | 15 | ECD on the Brain | Eli Diamond, MD | Discussion of ECD effects on the brain. |
| 10:50 AM | 15 | Endocrine Manifestations of Erdheim-Chester Disease | Alexandra Dodd, MD | Understand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD. |
| 11:05 AM | 40 | Expert Q&A | Julien Haroche, MD, PhD Eli Diamond, MD Ronald Go, MD Gaurav Goyal, MD (Moderator) | Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. |
| 11:45 AM | 15 | Pictures | N/A | |
| 12:00 – 1:00pm | 60 | Lunch | N/A | |
| 1:00 PM | 20 | Research Opportunities (Panel Discussion - 5 min each) | Eli Diamond, MD (Registry) Gaurav Goyal, MD (Survivorship) Jithma Abeykoon, MD (CSF1R, ERK) Matthew Collins, MD, PhD | Hear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research. |
| 1:20 PM | 20 | Expert Question & Answer Panel | Gaurav Goyal, MD Eli Diamond, MD Jithme Abeykoon, MD Matthew Collins, MD, PhD | Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don’t be shy, ask your questions about ECD in general! [Please note, the panel is unable to provide any personal medical advise during this session.] |
| 1:40 PM | 60 | Breakout Sessions | Kevin O'Brien, RN, MS-CRNP (patients) Sylvia Huang, PhD, MA, MEd, FAAHPM (Caregivers) | Breakout Session: - Patients: Personal Challenges in Living with Erdheim-Chester Disease - Cargivers & Family: Addressing YOUR Emotional Needs |
| 2:40 PM | 20 | Break | N/A | |
| 3:00 PM | 15 | General medical management for ECD | Kevin O'Brien, RN, MS-CRNP | Highlighting the importance of managing ongoing general medical problems. For example, hypertension, diabetes, weight, cholesterol levels, etc. These uncontrolled medical problems can compound overall disease burden. |
| 3:15 PM | 15 | Emotional and Cognitive Changes in ECD | Sylvia Huang, PhD, MA, MEd, FAAHPM | Living with Erdheim-Chester Disease can bring emotional, cognitive, and fatigue-related changes that are real and often invisible. This session offers understanding, reassurance, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience, wellbeing, and hope. |
| 3:30 PM | 15 | Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy, Relief, and Resilience | Richard Taylor, PhD, DNP, CRNP, APN-BC | This session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD). The goal is to offer meaningful, evidence-informed tools to reduce suffering, build resilience, and improve energy, mobility, and quality of life. |
| 3:45 PM | 15 | Movement is Medicine | Elizabeth Bohorfoush, DPT | Patients and caregivers receive guidance through gentle, low-level exercises to help reduce pain, build strength, improve posture, and encourage activity. |
| 4:00 PM | 20 | Expert Question & Answer Panel | Kevin O'Brien, RN, MS-CRNP Sylvia Huang, PhD, MA, MEd, FAAHPM Richard Taylor, PhD, DNP, CRNP, APN-BC Elizabeth Bohorfoush, DPT | Ask your questions and hear the answers from the experts. Don’t be shy, ask your questions! [Please note, the panel is unable to provide any personal medical advise during this session.] |
| 4:20 PM | 10 | ECDGA Close | Jerome Henson, ED (ECDGA) | Learn more about the ECD Global Alliance. Hear why the organization was created and what has been accomplished as a result. Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease. |
| 510 |
便條： 2月1日前報名，享受早鳥報名費用！節省 100 美元，註冊僅需 100 美元！
馬克·希尼意識獎和社區冠軍獎
2026 年 2 月 1 日 – 提交馬克·希尼意識獎和社區冠軍獎提名的最後一天。
- 請提交您的提名 這裡。
- 馬克·希尼意識獎。提名一名致力於通過提高醫學界對該疾病的認識來改善 ECD 患者生活的醫療專業人員。
- 社區冠軍獎。提名任何自願花時間幫助改善所有受 ECD 影響的人的生活的人（患者、護理人員、醫療專業人員、朋友等）。
聯絡方式：
Erdheim-Chester Disease Global Alliance
電子郵件： [email protected]
患者海報 – 提交
2026 年 2 月 1 日為完成病友海報（Patient Poster）以供於病友與家屬聚會展示的最後期限。 請在此提交您的海報資訊！
旅遊獎學金
旅行援助 – 格倫·帕德尼克紀念旅行基金現已接受 2026 年 ECDGA 會議的申請。
格倫·帕德尼克 （Glenn Padnick） 在與埃德海姆-切斯特病 （ECD） 抗爭數十年的同時，過著充實而有影響力的生活。從 2011 年到 2022 年，他在 ECD 全球聯盟董事會中堅定不移地奉獻精神，始終確保患者的聲音和需求仍然是每個決策的核心。
為了紀念格倫的服務和同情心遺產，他的家人慷慨地設立了格倫·帕德尼克紀念旅行基金。該基金提供經濟援助，幫助患者、護理人員和醫療專業人員參加年度 ECD 會議，幫助那些因經濟拮据而無法參加的人。
2026 年 ECD 會議的旅行援助申請現已開放。資金有限，將優先考慮以前從未參加過該活動的個人。我們的目標是利用可用資源為盡可能多的社區成員提供這個機會。
截止報名日期： 2026 年 2 月 1 日獲獎通知：不遲於 2026 年 3 月 1 日
會議飯店與旅遊資訊
會議飯店
伯明罕希爾頓飯店
808 20th Street South
Birmingham， AL 35205
電話：+ 1 （659） 251-1934
UAB伯明罕希爾頓飯店已預訂一棟房間供會議參加者使用。
房間必須於2026年4月6日前預訂，才能領取團體票價。
如果您在預訂客房時遇到任何問題，請聯繫伯明翰市中心希爾頓酒店的 Simon Hill。他的電話號碼是 205-910-1970，電子郵件為 simon.hill@hiltoncom。
機場交通
伯明罕-沙特爾斯沃思國際機場（BHM）
伯明罕機場至飯店提供免費接駁服務，由UAB的希爾頓市中心直接提供。
使用接駁車：
- 收拾行李。
- 請致電飯店 205-933-9000 申請接駁車服務。
- 前往門 #4L，等待標示為「希爾頓」的公車。
經由亞特蘭大旅行
哈茲菲爾德-傑克森亞特蘭大國際機場（ATL）距離伯明罕約3小時車程，提供直飛多數國家的國際航班。亞特蘭大機場與伯明罕之間有接駁服務，方便經由亞特蘭大抵達的旅客使用。
我們的贊助商
本次會議由我們的贊助者，來自澳洲墨爾本的 Charles Balnaves 神父促成，他為了紀念亡妻 Tanya 而支持本次活動。我們非常感謝 Charles 神父持續且慷慨的贊助。我們也對 ARUP 實驗室的支持表示感謝。
