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Updated: Jul 12, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
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状细胞疾病:将患者参与纳入国际会议可以改变生活经验的作用

Mariangela Pellegrini1, Subarna Chakravorty2, Maria Del Mar Manu Pereira3

  • 1European Reference Network on Rare Hematological Disease, the ERN-EuroBloodNets, Hôpitaux de Paris, Hôpital Saint Louis, Paris, France. Mariangela.pellegrini@aphp.fr.

Orphanet journal of rare diseases
|November 1, 2023
PubMed
概括

在欧洲,通过在科学会议上的以患者为中心的研讨会,加强了患者参与状细胞疾病 (SCD) 研究. 这些活动赋予了患者权力,并影响了研究议程,使整个SCD社区受益.

关键词:
国际大会国际大会.患者教育 患者教育对患者进行治疗教育.患者工作坊 患者工作坊公共患者参与研究的参与.状细胞疾病是一种状细胞疾病.

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