This review will summarise the achievements of Patient Organisations and Foundations started by affected Batten disease families, with an emphasis on their recent contribution to Batten disease, examine the benefits and pitfalls of their interactions with scientists and propose a way forward.

中文翻译：

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患者组织对NCL的贡献。

这篇综述将总结由受影响的巴滕氏病家族创建的患者组织和基金会的成就，重点是他们最近对巴滕氏病的贡献，研究其与科学家互动的益处和陷阱，并提出前进的道路。