All Categories

Sandy Royden of OPEN Health

15/7/2019

Second up in our brand new CEO Series is OPEN Health co-founder and COO, Sandy Royden. Sandy shares how she has been guiding the brands growth in the rare disease space and her aspirations for the future.

CEO Series: meeting the beating heart behind the RARE brands

1.	What made you want to move into the wide world of rare disease, and then specifically OPEN Health, and what did that journey look like?

Given my pharmacy background, I have always been interested in the pathophysiology of disease. Rare Diseases therefore fascinate me – as they ’fall outside of the norm’ in terms of common ailments and conditions. I strive to understand their genetic links or inherent causes, and then thrive on the opportunity to help communicate and explain this to a wider audience – HCPs, patients, family and carers. Being able to rationally explain a disease and potential treatment options, particularly in the rare disease space where their population rarely get any support, is hugely gratifying. This personal interest is also reflected across OPEN Health, where there are a number of like-minded people with similar interests. In particular, our director of rare disease, Gavin Jones, does a great job of really understanding the impact of a rare disease from a patient’s perspective, and communicating this across our business, so that we all share the same empathy, passion, and desire to have a positive impact on the treatment of these conditions.

2. What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

From a rare disease perspective, I think it is a case of constantly challenging ourselves to find innovative ways of supporting our customers. The landscape is rapidly evolving with significantly different ways of treating patients very much on the near horizon. You just have to look at the imminent introduction of gene therapies to see that healthcare communications and value recognition need to rapidly evolve. I think it is exciting that rare disease could be seen as the platform to promote new relationships between the varying stakeholders in healthcare including patients and their advocacy groups. We would like to be seen at the forefront of this new world and are busy working to create solutions to support improved communications and outcomes both now and long into the future.

3. What is your proudest moment in your career thus far?

My proudest moments are when you actually hear about ‘real’ patients who have benefitted from the treatments we have worked on. At the end of the day our goal is to ensure stakeholders are educated on relevant aspects, across a variety of different diseases and specific treatments, and that by effective communication initiatives we can optimise patient access to medicines.

4. What and who are your personal and professional inspirations and why?

I take personal inspiration from Audrey Hepburn – there was nothing she couldn’t do - she was a humanitarian, dancer, actress and member of the Dutch resistance. What I take from her is ‘endless optimism’ –‘Nothing is impossible’ – in fact the word itself says I’m possible!
From a professional perspective, with pharmacy at my core, I want to ensure we drive patient access to new and innovative medicines and technologies.

5. What advice would you give someone considering working in the rare disease space?

Whatever role you are considering playing in the rare disease community I would say go for it! It is very fulfilling to work in this field and supporting improved outcomes where there is significant unmet need. You will experience a close connection while making a difference for rare disease patients and their families. Whatever role you are in, my advice is that you develop a clear mantra in what you are trying to achieve and the benefit this will have within the rare disease community. By living and breathing this mission you will find that your voice will more likely be heard and you can have a greater impact.

6. Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

I think one of the most concerning gaps is the challenge of gaining appropriate funding for the use of medicines and therapies in rare disease. Given the numerous emerging new treatments and technologies there is rightfully a lot of hope within the rare disease community. However, these medicines will often come with a high price tag and their value to health systems may not be realised for some time after they are introduced and initially used by patients. This combined with health technology appraisals that are not best suited to assess value in rare disease and we have an issue. This is playing out at the moment with a number of high-profile cases not gaining approval for use in various health systems. We need to have more open dialogue across the different stakeholder groups in rare disease so we can ensure equitable access to the most effective treatments for patients.

7. What would you say are some of the biggest motivators for your employees?

I believe our culture is something that is incredibly important to our employees. We have a very diverse range of capabilities within our business and with that come wide ranging skill sets and personalities. Collaboration is so important to us in enabling people to positively work together in supporting improved outcomes for our customers and the patients they are striving to serve. Everyone in our business, from our creative directors to our admin staff, recognises that they all play a part in improving healthcare for patients which in turn motivates all of us to make every effort in making a difference.

8.

What are the toughest parts of being a CEO, and conversely what are the most rewarding?

Being a CEO can be extremely rewarding - particularly seeing and supporting people within our organisation to grow, develop and achieve their personal and professional aspirations. But alongside that comes some of the tough decisions – reducing resources and cutting your cloth during the challenging times.

9.

What would be your one wish for OPEN Health for the year ahead?

I would love to see OPEN Health continue to grow and further enhance our reputation in the rare diseases space. I want us to be able to deliver truly innovative programmes that have a measurable and positive impact on patients’ lives.

10.

If you weren’t CEO of OPEN Health what was Plan B? What did your 10-year-old-self want to do as a job?

I always wanted to be a pharmacist, and once qualified and more experienced in the various career opportunities. I sought out a clear path through marketing and healthcare communications. To be honest, if I had failed to achieve the grades to study for pharmacy, I was going to have a total career change and study hotel catering and management………who knows where that would have taken me!

To find out more about the work of OPEN Health please visit www.openhealthgroup.com

0 Comments

Rick Thompson of FINDACURE

9/5/2019

0 Comments

We are thrilled to launch our brand new CEO Series with friend of the revolution, Rick Thompson, With a surprising journey from moles and dinosaur digging to CEO of the patient loved charity, Findacure, Rick Thompson shares his journey into rare disease and his hopes and challenges for the year ahead

CEO Series: meeting the beating heart behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically Findacure and what did that journey look like?

I’ve been into science for as long as I can remember, and really just followed my nose in my studies. I did a Biology degree, and ended up specialising in Zoology. From there I spent time at the Natural History Museum in London, before starting a PhD all about moles. Now, moles are truly fascinating animals, and studying to be a doctor (the useless kind) was a fantastic experience. But by the end of the five year period it dawned on me that very few people in the world really cared about my work. It would never make anyone’s life better, or richer. It was this realisation that drove me to look for work in the charity sector, applying my scientific background to the medical field.
The position at Findacure was a really exciting one – it offered me the chance to learn more about the biomedical field, while interacting first hand with people living with rare diseases – people who rarely get any support. This was a huge opportunity for me to make use of my studies in a meaningful setting, and when I was lucky enough to be offered the job I seized it with both hands.
I’m acutely conscious that the majority of people working in this field have personal experience of rare conditions – something that I fortunately do not have. There are times when I worry that this disconnect could limit my ability to connect with the patient experience; however, I also hope that it helps to keep Findacure from bias towards any one condition, and drives us to find and listen to as many patient stories as possible.

2.	What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

The biggest challenge for everyone in this sector is funding and sustainability. A huge priority for us right now is to secure more long-term funding so that we can plan our training programmes in a more strategic manner, and hopefully grow our activities so that they can benefit more organisations. We hope that this type of sustainability will allow us to dedicate more time to our beneficiaries, but also more time to partnerships. There are a number of fantastic cross-rare disease organisations out there, Rare Revolution and Medics4RareDiseases to name two, that I hope that Findacure can begin to work with more closely in the next few years. This will help to build a tighter and more unified rare disease community, help us all to share resources and expertise, and hopefully ensure the sustainability of all organisations.

3.	What is your proudest moment in your career thus far?

This is a tough question. I was obviously very proud to take over Findacure as CEO, and I am proud whenever I get to walk out on stage and talk about our work. My proudest moments though tend to be more related to the impact of our work – seeing the energy in the room at the end of our conference or workshops always fills me with a sense of pride and well-being. I was also particularly proud when my mentee Liz got up on stage and delivered her first ever presentation to a live audience at last year’s peer mentoring summer meet-up event. She did an amazing job, and it felt like a huge personal achievement for her, and a great tribute to all of her hard work.

4.	What and who are your personal and professional inspirations and why?

David Attenborough is a national treasure and a true hero. I saw him talk in person recently, and his delivery, humour, and desire to share science in an accessible way is absolutely priceless. His passion, dedication, and openness is something we can all aspire to. Professionally, there is no one inspiration, it is more the knowledge that nearly every patient group leader that I work with is doing a similar job to me while living with the impact of a rare condition. Their positivity, energy, and drive is inspiring and a lot to live up to!

5.	What advice would you give someone considering working in the rare disease space?

Talk to patients and talk to parents as often as you can. Never lose sight of the fact that they are the people that you are working to support, and their voice cannot be heard too frequently.

6.	Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

In a word, no. Fragmentation of any given rare disease patient population means that most fall through the cracks of local support – whether care for individuals, or for charities seeking funding. At the national level, aside from major concerns about the impact of leaving the European Union (I will not use that word…), there remain serious worries about how the NHS will find ways to pay for many of the new rare disease treatments on the horizon. While prices are high in many cases, it is crucial that companies also feel able to secure a return on their investment in rare diseases. If they cannot, we will see more and more companies moving out of orphan drug development. The government have to find a way to balance this very tough situation.

7.

What would you say are some of the biggest motivators for your employees?

Without doubt the whole team are motivated by running events, and interacting with patients, carers, and charity professionals. We are part of a vibrant rare disease community, and love spending time hearing about all of their work, successes, challenges, and exceptional persistence.

8.	What are the toughest parts of being a CEO, and conversely what are the most rewarding?

Another charity CEO told me that in our sector, CEO stands for Chief Everything Officer, and I think this nicely summarises the challenges and rewards of the role. As CEO of a small team my job is to steer the ship, and plug the holes. If anything goes wrong, it is my responsibility to fix it, and deliver the work as quickly and seamlessly as possible – whether I know what I am doing or not! This can lead to some stressful moments, but also some huge successes. Luckily for me I am supported by an exceptional team at Findacure, so most of the time I get to bask in the reflected glory of their success!

9.	What would be your one wish for Findacure for the year ahead?

The easy answer is a nice long-term sustainable source of funding – but this really goes without saying. Aside from this, I would like to see us gain recognition amongst the medical professionals who run rare disease specialist centres around the UK. This would give us fantastic connections with the UK’s rare disease specialists, but also help us to find more new founded patient groups, and more newly diagnosed patients seeking support.

10.	If you weren’t CEO of Findacure, what was Plan B? What did 10-year-old Rick want to do as a job?

Well ten year old Rick probably wanted to be digging up dinosaurs. I never quite managed that, but I did something pretty close both by digging up 30 million year old fossil mammals in Spain, and writing a paper all about Ankylosaurs – so I certainly can’t complain!

To find out more about the work of Findacure please visit
www.findacure.org.uk

0 Comments

CEO
Series

Sandy Royden of OPEN Health

1.

What made you want to move into the wide world of rare disease, and then specifically OPEN Health, and what did that journey look like?

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

3.

What is your proudest moment in your career thus far?

4.

What and who are your personal and professional inspirations and why?

5.

What advice would you give someone considering working in the rare disease space?

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

7.

What would you say are some of the biggest motivators for your employees?

8.

9.

10.

Rick Thompson of FINDACURE

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

Author

Archives

Categories

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
Contact Us
Editor: editor@rarerevolutionmagazine.com
Advertising: rstewart@rarerevolutionmagazine.com

CEO​Series

Sandy Royden of OPEN Health

1.

What made you want to move into the wide world of rare disease, and then specifically OPEN Health, and what did that journey look like?

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

3.

What is your proudest moment in your career thus far?

4.

What and who are your personal and professional inspirations and why?

5.

What advice would you give someone considering working in the rare disease space?

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

7.

​What would you say are some of the biggest motivators for your employees?

8.

9.

10.

Rick Thompson of FINDACURE

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

Author

Archives

Categories

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease contentContact UsEditor: editor@rarerevolutionmagazine.com​Advertising: rstewart@rarerevolutionmagazine.com

CEO
Series

What would you say are some of the biggest motivators for your employees?

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
Contact Us
Editor: editor@rarerevolutionmagazine.com
Advertising: rstewart@rarerevolutionmagazine.com