本文是originally publishedin the Boston Business Journal.

Covid-19-大流行对我们的一生产生了重大影响。对于许多人来说，大流行和随之而来的社会疏远措施会增加孤独，压力，忧虑和其他强烈情绪的感觉，使心理健康成为焦点。结果，许多企业和社区领导者正在更加重视情感健康和福祉。188bet网址怎么打不开

While awareness of mental health has been brought to the forefront because of the pandemic, stigmas, financial expense and limited access still often prevent those most in need from getting help. One of the populations that is directly impacted is the rare disease community.

根据National Institutes of Health, there are 7,000 known rare diseases and one in 10 people in the United States are affected by one. Beyond the physical aspect of living with a rare disease, for many there is an emotional well-being and mental health component.Studiesshow that people living with a rare disease are more likely to experience depression and anxiety.

患有罕见疾病可能会使患者及其家人孤立，他们可能觉得很少有人了解他们正在经历的事情。此外，经常有频繁的医生就诊和旅行会引发压力。获得诊断可能会有恐惧和不确定性 - 平均而言，罕见的患者需要4。8年和7.3专家才能获得准确的诊断。The Journal of Rare Disorders. And, family members and other care takers are often balancing work with the care of a loved one.

Taking a holistic approach to health

In light of all of this, the Alexion Charitable Foundation (ACF) believes it is critical to take a full-brain approach to health that considers the physical, emotional and social factors that influence personal well-being. This holistic approach is core to the work of ACF, which through its Rare Belonging suite of funding priorities supports disease-agnostic organizations with national and global programs specifically focused on helping with the nonmedical challenges faced by the rare disease community. For example, with funding from ACF, Rare Belonging grantee Global Genes provided critical services like telehealth psychosocial counseling, special education and distance learning, home schooling tools and resources, and career counseling to more than 4,300 people. Additional Rare Belonging grantees include organizations like National Organization for Rare Disorders (NORD), Ronald McDonald House Charities, SeriousFun Children’s Network and others that provide mental health and wellness services for the global rare disease community.

ACF在支持心理健康方面的工作也超越了稀有疾病社区，进入了我们工作和生活的当地社区。188bet网址怎么打不开例如，在波士顿，ACF正在与大波士顿大姐妹协会和波士顿艺术学院基金会等组织合作，以促进学生及其家人之间的情感健康。

The impact of living with a rare disease goes far beyond the disease itself. It affects families and caregivers and has broad reaching implications in terms of mental health, education, and even job security. Through the Alexion Charitable Foundation, we are proud to work with disease-agnostic nonprofits that prioritize emotional health and alleviate the challenges that medicines can’t address, especially for those living with or affected by a rare disease.

The Alexion Charitable Foundation is a 501(c)(3) organization dedicated to providing promise and a sense of belonging, particularly for people affected by rare disease. The Alexion Charitable Foundation provides funding through two programs: Rare Belonging and local needs grants. To learn more about these programs, please visit theAlexion Charitable Foundationwebsite.

本文是originally publishedin the Boston Business Journal by Alex Schuman – Head of Corporate Social Responsibility, Alexion Pharmaceuticals and President of The Alexion Charitable Foundation.