To use more accessibility options, please use a different browser such as Chrome or Firefox.
PUT A FACE TO THE NAME
Meet the team
Rebecca is our co-founder and brings 30 years of client care experience and ethos to guide our dedicated team. With a passion for people and building networks, Rebecca has channeled a community approach to realising meaningful, accessible resources and the power of education through compelling story telling.Through the development of the company’s “safe hands” approach, Rebecca is committed to steering responsible and sensitive journalism and is active in driving this message forward.Rebecca is also co-founder and trustee of Teddington Trust, a charity supporting those with the ultra-rare condition xeroderma pigmentosum, supporting people internationally with vital protective equipment, education and health and well-being programmes.
Nicola is our uber creative co-founder and editor-in-chief. With a strong background in design and a passion for writing, Nicola is the driving force behind our creative vision, and uses her strategic experience in large-scale project planning to oversee our varied work, including RARE Youth Revolution.Nicola is co-founder and trustee of the charity Teddington Trust, volunteering her time to drive forward their mission—supporting families living with the ultra-rare condition xeroderma pigmentosum. Nicola is also author of the award-winning rare disease children’s book series, Little Ted. When not dedicating her time to rare disease, she is raising her two gorgeous sons, and is a rare mama herself.
Special Editions Editor
Emma’s background is in the arts, having completed a diploma in foundation studies in Art and Design and an MA in the history of art and design. She has previously worked in retail merchandising for various fashion brands. Emma’s creative talents, both in design and writing, are always innovative and perceptive to her client’s brief. Emma has a love of painting and sketching, but these days her artistic endeavors consist more of potato printing and making lolly stick people with her children, than painting watercolours!
Geoff is our digital editor. After gaining a degree in English literature and a postgraduate certificate in applied linguistics, he worked in the education sector for twenty years, teaching in schools in the UK and overseas, as well as serving as an examiner and writing a textbook. He now takes immense pride and pleasure in working with the rare disease community to share the stories that matter to them. When he is not editing or writing, he enjoys reading, the great outdoors and spending time with his family.
Business Development Associate
David is our very suave and never-lost-for-words business development associate. He is a business economics graduate, who was diagnosed with occipital horn syndrome in 2016. David is the only known person in the UK with this syndrome. He is passionate about sharing his health journey, in the form of writing, advocacy and public speaking and also working with clients to share their journeys and raise their profiles through communication strategies. David is a keen Leyton Orient football fan, who regularly goes to games with his dad. In his spare time, you'll often find him planning his next adventure.
Team and Communities Associate
Rebecca, also known as Becky, lives in Glasgow and, among other things, is mum to four young girls. Her eldest daughter lives with not one but two rare genetic conditions making her the only child worldwide with both. With a background of over 13 years in customer service, Becky loves nothing more than curating relationships with like-minded people across the world, making her the perfect fit to look after our charity and media partners as well as our social media channels. When she's not working, she loves a good box set or making memories with her daughters. You can usually find her with a cup of coffee in hand.
Content and Editorial Assistant
Joe is our content and editorial assistant. He is a creative, whose skills range from graphic arts to blog writing and everything in between.
At just 14 months old, Joe was diagnosed with two rare genetic diseases—cystinosis and Fanconi syndrome. If he is not out walking or getting stuck into a whodunnit, you’ll find Joe watching a Doctor Who box set with a bar of chocolate (or two).
RARE Youth Coordinator
Chelsea is a recent Business Management and Psychology graduate from the University of Aberdeen and was diagnosed with Lupus eight years ago at the age of 14. She thrives on being around people and supporting them. As well as this, she plays table tennis which she has done so for over a decade. Finally, she finds happiness in her creative pursuits in crocheting, drawing and making things, seeing it as an outlet to have fun and also create her own Etsy store. Writing especially gives her the opportunity to express her true feelings about what she cares about.
RARE Youth Intern
Katie is a well known face in the RARE Youth space having been a regular guest blogger and she also runs Cards for Bravery which encourages people to make cards for hospitalised children. Katie lives with Ehlers-Danlos syndrome and chronic intestinal pseudo-obstruction. She is passionate about transition from paediatric to adult care and has written and spoken publicly several times on this topic. Katie will lead on our Genomics and Relationships project. She loves to read A LOT and enjoys exercising her creative streak.