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硬皮病研究基金会：以治疗热情为指导
硬皮病研究基金会 (SRF) 是一个非营利组织，自 1987 年成立以来一直致力于寻找治疗硬皮病的方法。SRF 的使命是资助和促进旨在了解、治疗和最终治愈这种使人衰弱的疾病的研究已成为美国硬皮病研究领域最大的非营利性投资者。
硬皮病是一种罕见的自身免疫性疾病，仅在美国就影响了大约 300,000 人。它会导致全身结缔组织硬化和增厚，导致器官损伤和功能障碍。硬皮病的症状因人而异，但通常包括皮肤紧绷、关节痛、消化问题、肺部并发症和心脏问题。
尽管它每年都对全世界患者的生活和受其影响的家庭生活造成毁灭性的影响；硬皮病尚无已知的治愈方法或有效疗法。这种缺乏进展凸显了为什么像 SRF 这样的组织对于促进我们对这种复杂疾病的理解如此重要。
SRF 解决硬皮病的方法涉及资助创新研究项目，旨在揭示这种疾病在分子和细胞水平上如何发挥作用的新见解。通过支持跨多个学科的尖端科学，例如遗传学或免疫学或有前途的药物的临床试验；他们希望加快为患有这种疾病的患者开发有效疗法的进展。
他们工作的一个例子是他们支持 Robert Lafyatis 博士关于纤维化的开创性研究 - 与硬皮病相关的最严重的并发症之一 - 该研究旨在根据几年来收集的患者样本的遗传分析数据确定药物开发的新目标。
另一个例子是他们与 Boehringer Ingelheim Pharmaceuticals Inc. 等制药公司的合作，后者自 2016 年以来一直与他们合作开发硬皮病的新疗法。这种伙伴关系促成了多项临床试验的启动，其中一项试验目前正在测试一种名为尼达尼布的药物，该药物在减少硬皮病患者的肺纤维化方面显示出令人鼓舞的结果。
SRF 对推进硬皮病研究的承诺不仅仅局限于资助和促进研究。他们还通过网站、社交媒体渠道和教育活动为患者及其家人提供资源和支持。他们的网站提供了有关疾病本身的大量信息、目前可用或正在开发的治疗方案；以及有关如何有效管理症状的提示。
总之，硬皮病研究基金会是一个在寻找治愈这种衰弱性疾病方面取得重大进展的组织。通过其为跨学科研究项目提供资金的创新方法以及与勃林格殷格翰制药公司等制药公司的合作，他们正在加快为患有这种疾病的患者开发有效疗法的进展。
他们通过网站或社交媒体渠道等教育资源支持患者需求的承诺表明，他们了解提供综合护理的重要性，而不仅仅是科学研究。在全球捐助者的持续支持下，他们对寻找治疗方法充满热情；我们可以希望，很快有一天，硬皮病对全球人民生活的破坏性影响将会结束。
srfcure.org
