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Autumn 2018 ​RARE Employment

Rare disease employment

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RARE Inspiration:

Let’s talk about the ‘I’ word 

Inspiration comes in all shapes and sizes, from the beauty and wonder of the natural world to the accomplishments of the humans who inhabit it. We are surrounded by catalysts ready to inspire those who are open to seeing it. So, with this, our second birthday edition, we thought there would be no better way to celebrate than to let our C.E.O, Rebecca Stewart take you back to where it all began… Our own RARE Inspiration 

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Clinical Spotlight 

RARE Revolution meets Blockchain Tech 

In the world of technology there is none more topical nor difficult to get your head around then Blockchain. Here, Helen Disney, CEO of Unblocked explains in plain English what exactly it is and its potential to revolutionise the world of rare healthcare, research, and drug development 

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Charity Spotlight 

Finding Your Feet is the next step for ampuetees 

When Corinne Hutton lost her hands and lower legs in a battle with sepsis in 2013, her life changed forever. After going through rehabilitation and learning to walk on prosthetic legs, Corine found very little peer support available for dealing with life as a quadruple amputee and facing the challenges that it brings. She decided to change that…

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RARE Employment 

David Rose introduces RARE Employment, with another eclectic mix of content covering a variety of perspectives from patients, carers, and advocated, to industry professionals and charities. We take a look at this broad topic through your experiences and share expert advice 

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Creating Inclusive Workplaces 

How can employers and employees create an inclusive workplace that supports people with disabilities and promotes them positively in the workplace? 

Part 1: Employer’s Perspective 

Dakota Blue Consulting is an HR consultancy supporting businesses in their growth and goals by unlocking their people potential. Their team is here to explain why creating an inclusive workplace for all workers, no matter their age, gender, race or disability is pivotal to the success of an organization and its brand, and how rare employees can ensure they are supported in their dream job. 

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Page 23 

A Patient Survey 

By Ring20 Research and Support UK CIO 

As a patient group for an ultra-rare disease, supporting families from across the world, Ring20 counts amongst their members a few adults of employable age. The group wanted to know their experiences of gaining and staying in work and whether having a diagnosis of ring chromosome 20 syndrome, or r(20) for short, has had any impact on their employability. 

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Page 26 

This wasn’t in The Plan 

For our Editor-in-Chief, Nicola Miller, the diagnosis of her son has a rare disease resulted in a complete career direction and a journey down a very different path. Nicola talks about how it’s okay to deviate from the plan and to dare to reimagine yourself when adversity throws up an expected barrier 

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Above all Else: 

Building the Memories 

When Daniel and Patricia Lewi’s daughter, Amelie, arrived into the world little did they know how impactful her life would be to a community they didn’t yet know. But Amelie’s short life has created a lasting legacy for others that follow her, all while teaching those she loved all they needed to know about what being a family really means. Daniel talks about how Amelie changed the whole course of their lives and put their high-flying careers on hold to focus on what really matters- family 

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Choosing RARE 

‘’The train is moving swiftly, through green, luscious fields in rural Italy, taking me to another rare disease family. The downtime allows me the luxury to reflect on how I ended up here’’ 

With a void of information available, Gay Grossman, like so many others in the rare disease world, juggled starting a charitable foundation alongside caring for her daughter, Lilly, full time. What Gay didn’t know at the time was that her vast experience raising a child with the rare disorder ADCY5 – related Dyskinesia, and her previous role in sales and marketing would allow her to forge a new career helping other families at the beginning of a journey she started 21 years ago. 

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Cystic Fibrosis: Studying and Working with a rare condition 

Miles Murawiecki explains the importance of putting your health first and asking for support in order to reach your maximum potential 

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Letting go of the old Ellie 

Ellie Jean B is a Rare Revolution regular and here she shares in her usual honest and raw style, her truth about adjusting to her new norm when rare disease interrupted her life, work, and interaction with the world around her, as she struggled with losing the old Ellie 

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Chasing Rainbows 

David Rose is part of the Rare Revolution Magazine family, having joined as staff in the spring of 2018. On graduating, David dreamed of a career on the trading floor, but his health had other ideas. Instead of chasing the pot of gold and jeopardizing his health, he decided to start looking for a purpose and found a new career

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Academia versus Ataxia 

Zoyeb Md Zia was busy being a teenager, a bright student and keen athlete with a great bunch of friends, who, during a game of football, couldn’t make his food connect with the ball. Little did he realise at the time that this was the onset of spinocerebellar ataxia. 

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Working with Reality 

University was a challenging time for Isabelle Garreaud as her condition, Gorham Stout Disease worsened. It taught Isabelle she would need to take a more realistic approach to her career path, one that her body could also keep up with. Isabelle’s love for writing and a surprise relationship with a retail store meant Isabelle can access employment that works for her

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An Accidental Diagnosis 

In 2016, a playground accident unearthed a rare bone condition in Beatrice, who would go on to become the youngest known patient to be diagnosed with Bertolotti syndrome. Her mum, Catia Teixeria, spoke to David Rose about the chance event and what this diagnosis has meant for her daughter and their family

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Page 54

Ten in Ten with Suzanne Morris 

The rare disease Behcet’s Syndrome comes under the umbrella term of vasculitis, alongside 18 conditions. Suzanne Morris lives with Behcet’s Syndrome and spoke with David Rose about how her life has changed over the years, in terms of her work life and how she manages her daily health. 

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Page 58 

Creating Inclusive Workplaces 

Part 2: Employee’s Perspective 

What do employees need to know? 

If you have a disability, you are not alone. Statistics show nearly 1 in 5 people in the UK has a disability. You may well have faced discrimination in the workplace, and sometimes the fear of facing discrimination can put people off applying for jobs. 

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Page 68

Resident Columnist, Richard Gelati 


What’s in a job? 

You can tell a lot about a person from the type of job they do and how they do it. I see this in my own family and with many of my friends who have a very strong work ethic; whatever they do is accomplished very well and to the best of their ability

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Page 69 

Dying in the surf for the NHS 

Resident Columnist 

Jennie Smales 


@Littlelifeofmine blogger Jennie is a regular columnist for Rare Revolution. Jennie’s Rare Reflections are always raw and straight from the heart as she talks about juggling life as a mother and wife, with the debilitating nature of her chronic multiple rare diseases 

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