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Realising our workplace vision

The RARE Rev culture by co-founder and creative director, Nicola Miller.

If you have followed our RARE Revolution journey from the start, you will know that just like many who work in the field of rare disease, it wasn’t our Plan A. Both myself and Rebecca were busy in our respective careers when rare disease showed up and knocked us onto another path. 

For any parent, finding or keeping that dream job, while allowing you to be the parent you want to be for your children can be challenging. Then add in the extra demands of raising a child or children with complex health needs and it doesn’t take a scientist to work out that on paper you start to look less favourable than other suitably qualified candidates.

Nicola co-founder and creative director and Rebecca CEO

From attending multiple medical appointments, therapy sessions, lengthy school meetings and ever-changing health status to periods of illness—no two days are the same. The impact of this on your ability to perform your role and your overall career prospects can be significant. It certainly was in my case. (Ref RARE Employment, Issue 009, Autumn 2018. This wasn’t in the plan)

Of course, this is not just a barrier to career success for parents. It poses a challenge for young people living with rare and complex health conditions who are looking to enter the world of work, and those working hard to maintain a career. Your career progression ceiling may well feel determined by perceived limitations imposed by health.

Our RARE Rev dream was built on overthrowing this barrier. We created our own business model, on our terms which allows our rare families to thrive while we enjoy a rewarding career in a field we love, and where we can make a difference every day.

This is an ethos that runs through the veins of our growing organisation today, and four years in we are going from strength to strength. Providing opportunities and a workplace culture that is fully inclusive is fundamental to our operations and indeed success. To date we have a passionate and motivated team of six, and all have a close and personal connection with rare disease. This allows us to build our brand rooted in our personal connection and strong desire to serve a global community that our team are personally invested in. As a group we represent the voice of patients, care-givers, families and advocates and this deeply enriches our work.

RARE Revolution journey

From an employer’s perspective it isn’t without some challenge. This means managing deadlines and planning workflow capacity with an ‘expect the unexpected’ attitude. At any given moment one of our team could be facing a health crisis or that of their loved one, and this means that we need to be able to think and act in an agile way to respond to this.

This is only possible with a strong and committed team, who will without hesitation, swoop in to lend a hand when needed. We are blessed to have such a talented workforce who can turn their hand to almost anything we throw at them, but that is not by default. Recruiting the right people is key. Our recruitment process is driven by identifying people who will strengthen our work family unit both in the varied skills they can bring, but also in their attitude, resilience, and empathy for others around them.

We work as a team and to coin a popular phase at the moment, “No troll left behind”—in short we work together to get the whole team over the finish line every day, week and month. Our challenges are shared, and our successes are all the sweeter for it!

RARE Revolution journey

It is reported that Albert Einstein said this, although I believe the jury is still out on whether he actually did, but regardless it’s a saying I love.

Everyone is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.

The simple truth is, there is no `one size fits all` model for employment. Furthermore, life is an ever-moving juggernaut, so what works for a valued team member today may not do so always. As an employer it is your responsibility to find the zone of genius in each member of your team, so that the work they are doing allows them to shine and be the best they can be. After all, aren’t we all better at doing things that excite us?

As an employer we get immense satisfaction from seeing our team, individually and together, rise-up and accomplish great things in the name of RARE Revolution!

In return, our commitment to our team is one of endless support, appreciation and reassurance that if and when their personal rare road ahead gets rocky, they can count on us to be there to help them through it. What started out as a vision of two sisters has become what feels like a little bit of magic and it is our absolute privilege to be steering this most incredible team towards our shared future vision.

So, if I could offer out any advice for employers, I would simply say; see no barriers, look within, and live your vision—a company manifesto means nothing if you can’t deliver it in practice and that is the true test of a company’s value and worth.

Achieving an inclusive workplace culture fit for our rare disease community takes passion and unwavering commitment to this when tested, but with steadfast belief, what lays on the other side is life-affirming and enriching for all.

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