醫療資源
醫療專業資源
ECDGA 很高興地宣佈，美國國家綜合癌症網路 ® （NCCN） ® — 一個由領先癌症中心組成的聯盟 — 發佈了新的 NCCN 組織細胞增多症指南®。這些臨床實踐指南為診斷和治療成人三種最常見的組織細胞增多症提供了最新證據和專家共識：朗格漢斯細胞組織細胞增多症 （LCH）、Erdheim-Chester 病 （ECD） 和 Rosai-Dorfman 病 （RDD）。NCCN 指南可以説明患者、家屬和醫生獲取有關癥狀、診斷、治療等的最新資訊。在尋求藥物和療法覆蓋範圍的批准時，該指南還可以作為有用的工具。這些指南每年至少更新一次，並且可以隨時訪問。在下方或 PubMed 上訪問您的副本。
Survivorship Issues in Adult Patients With Histiocytic Neoplasms
Expert guidelines for ECD care and treatment, written in 2020, can be found here: Erdheim-Chester disease: consensus recommendations for evaluation, diagnosis, and treatment in the molecular era.
Expert presentation slides and videos on ECD cases and ongoing research are listed under Medical Symposium or our YouTube channel.
Current ECD studies and trials are listed online to assist physicians and patients.
Medical providers that need assistance gaining approval for an ECD patient’s care and medication can find more information here: Filing Payer Appeals.
Caring for Your Patient with a Rare Disease is provided by the NIH to help medical personnel when presented with a rare disease case, including tips for ICD coding.
ECD medical experts in our community have helped compile two types of brochures for general education and awareness purposes. The patient brochure is available to help new members of the community understand the basics of ECD. The medical brochure is available to share with your care team or any medical professional. Request a free copy by filling out this form.
For ECD researchers:
We are the only private funder dedicated to ECD research.
Learn more about our research funding opportunities.
Learn about scientific meetings the ECDGA will be hosting and attending.