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 Action for XP, 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.
Editor-in-chief
Nicola Miller
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 Action for XP, 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.
Senior Associate partnerships and delivery
Becky Pender
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 15 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 RARE community, charity and media partners as well as our patient engagement projects. When she's not working, she loves a reading or making memories with her daughters. You can usually find her with a cup of coffee in hand.
Associate editorial and design
Emma Bishop
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!
Writer and digital editor
Karen Roberts
Karen has 20 years of experience in the media industry. She has worked as a journalist for both regional and national titles, and has also worked freelance in media relations and communications. She is committed to responsible storytelling and has a passion for bringing attention to issues and voices that might otherwise go unheard. Karen is a mum of two and is based in the north-east of Scotland. When she’s not working, or providing a taxi service for her children, she enjoys writing poetry and watching bingeworthy box sets.
Creative designer
Joe Rumney
Joe is our creative designer. He is a creative person, whose qualifications range from graphic arts to English language and everything in between.
At just 14 months old, Joe was diagnosed with two rare genetic conditions—cystinosis and Fanconi syndrome. If he is not out walking or getting stuck into a whodunnit, you’ll find Joe watching his favourite shows with a bar of chocolate (or maybe two).
