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RARE INSIGHTS

Professional careers and rare disease – finding a balance that works

22/9/2020

1 Comment

 
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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.
​
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. 

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 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. 

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

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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1 Comment
Robin A Powers
27/10/2020 19:00:47

I keep trying and I am doing everything you have said and this rare patient still cannot find a job and after a degree of biochemical pharmacology of rare disease from Buffalo State college a bachelor's of science currently I'm in a master's program for an MPA but with my you know academic what's it called transcript and with my past work history I just don't understand why it is that now that I have a degree and I'm saying that I'm disabled I can't seem to get a job because it's the only thing that's changed just that I have a degree and now I admit that I'm disabled but I would rather not lie so like you said on there to be honest who I am and honestly I've gotten fired for being disabled so far since I've been honest about it I've gotten places that wouldn't hire me because I was disabled because they were judging me on hours of attendance for school with chemo which is not the same of hours of attendance with a job when I'm not having chemo and that was from Wegmans which I would not expect from Wegmans I mean I've just been judged everywhere because I'm disabled it seems I cannot really think of much else since I have put myself out there for almost everything so I don't know I would like some advice as to how I could find a job because I know that there's very many things that I could do very you know rare and common things or even kind of things but there's just lots of things that I can do so I want a job please help me rare revolution magazine

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