Being able to work means so much more than the money we earn. Having a career can give our lives a sense of purposeful accomplishment while providing countless opportunities to learn, grow, and develop fulfilling relationships. The employment benefits you receive, in addition to your salary, can also provide you and your family with an important financial safety net.
But finding the right career (and employer) can be especially complicated and challenging for adults with rare diseases. This toolkit is designed to
help you understand and evaluate the work-related options and employment benefits that will best suit your abilities, healthcare needs and financial resources, whether you:
Have recently been diagnosed with a rare disease
Are looking for a new job while living with a rare disease
Are returning to work after a health crisis or disease progression
Receive disability payments but would like to work without losing this benefit
Or already have a career but are not taking full advantage of employer benefits programs
The toolkit also features tips and advice from rare disease patients and experts to help you make smart decisions and avoid common and costly mistakes.
Consider this a high-level guidebook for making the most of the many opportunities for part-time, full-time, and remote work available to people living with a rare disease. If you want to dig deeper into any of the topics, we provide links to many reliable sources. And, of course, Global Genes is always here to help you in any way we can. To contact us, fill out our confidential Patient Services form. Within 2-3 business days, you will receive a personalized response that will include information, resources, and connections that address your specific needs.