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Working While Rare

Get three perspectives from patients and professionals who are navigating the working world while managing a rare disease.

screenshot of a webinar about rare disease patients and employment

Anyone who has ever walked into a job interview knows how it feels to present yourself, your experience and your aspirations to a prospective employer. People who live with rare and serious disease look for work with the added burden of their condition. Then, once they’re hired, they find ways to adapt to the job’s requirements and sometimes need accommodations

But a study of over 1,000 U.S. workers found that 60% believe leaders are unprepared to support employees who have a serious and or chronic medical condition.

This summer, the National Organization for Rare Disorders offered a webinar focused on employment issues. Here’s what three rare disease patients – who are also employees – had to say:

“We are good employees and we are worth having around, and that’s something that you need to remind yourself.”

-Lisa Massey, Program Specialist at the Association of Medical Colleges, who lives with an immunodeficiency

“It’s about having ongoing conversations, like with any relationship. If you are being open, then there is much less of a chance for miscommunication, mystery and people assuming things.”

Brett Chinn, founder of a coaching and consulting firm, who lives with Ehlers-Danlos syndrome

“My job is very important to me. I love it and I want to do the best I can. I’m trying to shift and focus on what I still have and what I can still offer.”

-Ellyn Goodrich, a mother of three and a teacher, who has a rare form of bile duct cancer