Working Rare: Employment Considerations for People Living with Rare Diseases

Written by Dennis Lodge

Inclusion in the workplace is a big thing for virtually every major corporation in the world, however, the World Economic Forum statistics say that merely 4 percent of global enterprises provide workplace conditions that support employees with specific medical conditions. It’s often impossible to assure employers that your condition is not going to harm your efficiency. For others, spending eight hours in an office is not an option. 

In this article, we are going to examine what options for work are open for people who live their lives and struggle with rare health conditions.

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The Online Market is Always Open

Apart from being open 27/7, the online job market is global, versatile, and abundant in employment options. According to this year’s statistics, there are 4.7 million people in the US that work online. Furthermore, with the advent of digital technology more jobs will move from physical to cyberspace. The development of VR and AR technology further facilitates remote jobs, allowing people to operate machines remotely. 

With so much happening online, there’s always a need for fresh content so there is no lack of opportunities for designers, programmers, writers, or animators. These are all flexible positions that you can adapt to your needs. One of the advantages of these types of jobs is that there is a set deadline for each project so it’s possible to work when the conditions allow it. Living with a rare disease means having to move around for therapy, staying in hospital for days, and often being unable to work for a while and that’s why flexibility is the keyword. The online environment offers flexibility that the physical workplace can never provide.

One of the best job opportunities for people with master’s and Ph.D. degrees to monetize their knowledge online is through academic writing. There are online services that provide resume help, essay writing, and other services for students that allow writers to choose their tasks. This means a person can work when it’s convenient. Some agencies even allow transferring workload to another available writer which covers that chance of sudden health issues.

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Find a supportive work environment

Living with a rare health condition is much easier with the support and understanding of the environment. Therefore, when you’re looking for a job, investigate company culture and workplace atmosphere. It’s not easy to handle the pressure of the workload while your mind is set on the expectation of the call for transplantation. Having people who understand your position around you is essential in these situations. 

According to a recent report by CNBC, the tech industry is the leader in inclusive and positive workplace culture. For top-tier companies, inclusion doesn’t mean keeping up with the legislative minimum but also responding to specific requirements of their employees. This also means specific healthcare plans which would support the needs of employees with rare diseases.


Life is a struggle, even more so while struggling with a rare health condition. The lack of experience in modern medicine, unavailable treatments, and the uncertainty of finding a donor all make living itself too much of a challenge. Most job providers on the market are not nearly prepared for the workforce with specific medical needs so finding a suitable job is not easy. The online environment provides loads of opportunities for work, however, the costs of treating a rare disease demand high payment. Despite all challenges and obstacles, if finding a job is your goal you should never give up.

About The Author:

Dennis Lodge is a freelance journalist, blogger, and copywriter who writes unique and research-based content about education and careers. He is an accomplished traveler and extreme sports enthusiast.

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