Team & trustees
Our team
Sarah Baker
Chief Executive Officer
Sarah joins CamRARE as Chief Executive Officer, bringing over 20 years of leadership experience across education, special educational needs and disabilities (SEND), and inclusion, alongside a strong personal commitment to improving the lives of people with rare conditions.
She began her career as a teacher and SENDCo, progressing into senior leadership roles across local authorities and multi-academy trusts. As a founding CEO, she established and led education provision across multiple regions, championing inclusive practice and support for children and young people with complex needs.
Sarah has worked across education, health, social care, and the voluntary sector, collaborating with professionals, families, and communities to drive meaningful change. She brings both strategic expertise and lived experience of SEND.
Alongside her role at CamRARE, Sarah holds non-executive positions across education and the charitable sector. As CEO, she leads the organisation’s strategy, partnerships, and growth to ensure people affected by rare conditions have the support, connections, and voice they deserve.
Helen Boyd
Operations Manager
Lindsey Brown
Events & Projects Officer
Lindsey is the Events & Projects Officer at CamRARE. She supports Jo with the logistics and promotion of the CamRARE events programme and also supports with many aspects of project administration. Lindsey also develops and organises the Unique Feet membership and activity programme. Lindsey’s background is in marketing and communications. In her spare time Lindsey is an active volunteer for Girlguiding.
Vaila Morrison
Design & Communications Officer
Our board of Trustees
Our trustees include some of the UK’s foremost experts in rare diseases and our founding members come from diverse backgrounds in academia, business, healthcare, education and patient support networks.
Emma Green
Chair and company director
Loretta Macinnes
Trustee, rare disease patient and parent
Loretta is a marketing and policy expert, and a writer. She worked in health technology for many years before becoming ill and eventually being diagnosed with Fabry, a rare disease. This affected both herself and two of her children. Her experience of the path to diagnosis; of teenage to adult health transition; and of the lack of support for young adults, particularly around mental health, lead her to set up her own website, My Fabry Disease, and to begin to advocate for people with rare disease.
Sue Berry
Trustee and rare disease parent
Ruth Diazaraque Marin
Trustee and Vice President R&D Rare Diseases
Ruth brings over 15 years of experience working in BioPharma in many therapeutic areas. As VP of R&D Alexion, she has strategic oversight on her company’s pipeline to shape its rare disease portfolio and identify new opportunities and therapeutic modalities that can serve people living with Rare Disease best. She specialised as an Internal Medicine doctor in Spain many moons ago and has lived in 4 different countries.
Billy Lucas
Trustee and Treasurer
Billy is an ACCA chartered accountant with a previous background in Marcomms in London before moving to Cambridge and taking this experience into the Biotech industry. Billy has over a decade of experience in senior finance roles with a passion for financial control and reporting to help early stage businesses scale and expand. His wife has a Cystic Fibrosis, a rare genetic disease where improvements in treatments has given him a passion to help others with improvements in their own or loved ones healthcare.
Catherine O’Sullivan
Trustee and Paediatric Immunologist
As a Paediatric Immunologist, Catherine is dedicated to caring for children and young people with inborn errors of immunity, a group of rare conditions that profoundly impact families. My passion for supporting those living with rare diseases drives my commitment as a Trustee. With over 18 years of medical experience, I bring strong problem-solving skills, teamwork, and discretion to my role. Given the rarity of the conditions I specialise in, collaboration, peer support, and networking—both nationally and internationally—are essential to delivering the highest quality care.
Bill Eldridge
Trustee and Biotherapeutics Scientist and R&D Leader
Bill Eldridge is a biotherapeutics scientist and R&D leader with over 20 years’ experience in discovering and developing antibody, peptide and scaffold medicines, taking assets from target
validation through preclinical strategy towards IND. He has held senior roles including CEO, CSO and programme lead in UK biotech, where he has integrated discovery, CMC, toxicology and PK/PD into discovery and development programmes at board and governance forums.
Bill has joined as a trustee of the Cambridge Rare Disease Network (CamRARE), where he helps to connect industry, researchers and the rare disease community to move promising treatment ideas closer to people living with rare conditions.