Professional careers and rare disease – finding a balance that works

RARE Revolution’s David Rose, is our business development associate and an ultra-rare disease speaker. David gives us his unique perspective on the topic of
​RARE Employment.

The perfect job is out there for everyone – it just takes a bit of hunting down sometimes. For myself it has taken a lot of back and forth to be in a stable working position. I really struggled to find work that gave a balance of career progression and flexibility to manage my rare condition.
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Working from home has been instrumental to finding that balance – it has revolutionised my working life. I was starting to give up thinking I would not find anything that that allowed me to prioritise my health, but I did, and I’ve been working for Rare Revolution Magazine for over two years now. 

It has not been a smooth journey living with a rare condition and trying to find employment that works for me. I’ve had a lot of remarks when I wasn’t working that were hurtful – often it was the classic ‘it must be great not having to work every day’. For many, work can be your identity. One of the first, if not the first question people ask is ‘what do you for work?’. People in the rare disease community are no different – we want to be part of something. 

 I’ve had a lot of remarks when I wasn’t working that were hurtful – often it was the classic ‘it must be great not having to work every day"

David Rose - Business Development Associate 

David (left) with Alan Thomas (Ataxia and Me) who were both part of the "I am Number Seventeen" campaign recognising rare disease influencers.

Working for a company that has the welfare of its employees at heart and a flexible working model has shown me just how possible it is to still strive for professional growth and look after my health. I started with RARE Revolution in 2018 having applied for a junior social media position but quickly progressed to Business Development Associate and I am part of the senior team. Together we are planning the future of RARE Revolution and it is great to be a valuable part of those plans.

​Still amid the COVID-19 pandemic, a new ‘normal’ for working life is emerging. Businesses forced overnight, to manage teams remotely have realised that teams can be just as productive as when office based, and this new working culture brings with it an opportunity for those of us who need that flexibility.  Working from home has made working life possible for me and I imagine the majority of those living with a rare condition would resonate with this.

 I hope that this pandemic can leave a positive, equitable legacy that benefits our community.

Top Tips for RARE Employment  

The following "TOP TIPS" have been collated from the experiences of David Rose, Daisy Marriott and David Singleton. Huge thanks to them for their valuable insights. 

Please READ, LEARN, SAVE, PRINT & SHARE by clicking on the image or uising the button below: 

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For more insights into employment and rare disease why not check out our
RARE employment Q & A with Inspector David Singleton

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