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Team & trustees

Our team

Jo Balfour MD, CamRARE

Jo Balfour

Managing Director

Jo is Managing Director and founding member of CamRARE. She leads the charity’s strategic development and growth, its innovative events program, unique projects and cross sector networking initiatives. With 25 years prior experience in education management and advisory roles, Jo shows unwavering dedication to providing exceptional care and support for those living with rare conditions through CamRARE.

CamRARE Team Page Team Member Georgie Windsor

Georgina Windsor

Patient and Public Involvement, Engagement, and Participation (PPIEP) in Rare Disease Research Coordinator

Georgie supports patient-led and co-produced research by managing PPIEP for the Rare Disease Research Network. A biological anthropology graduate with experience in rare disease research and who lives with several rare conditions (EDS, PoTS, MCAS), she is passionate about incorporating vital lived experience perspectives at every stage of the research pathway. She uses her 7-year experience in youth and disability change-making to advocate with the rare disease community in her primary role and supports various CamRARE events.
Cambridge Rare Disease Network - CamRARE | Team 1

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 headshot

Vaila Morrison

Design & Communications Officer

Drawing on her architectural design roots and passion for inclusivity, Vaila, brings a splash of creativity to her role as CamRARE’s design and communications officer. Vaila and her family are deeply involved in the RARE community, due to her daughter’s rare genetic condition, and she’s all about championing patient voices and making a colorful impact!
Celia Enderle profile pic

Celia Enderle

Community Engagement & Development Officer

Celia champions inclusivity and respect in the community, putting her background in education, mentoring, and as positive psychology practitioner to best use. She’s a curious, analytical thinker and loves to get stuck into a problem and find solutions. At CamRARE, Celia’s boosting stakeholder involvement, establishing fresh collaborations and guiding our young adults through transition.
Cambridge Rare Disease Network - CamRARE | Team 2

George Nicolaou

Web Developer

George is a Web Developer with a passion for all things Open-Source and loves tinkering with new programming languages. George provides his coding expertise in relation to CamRARE’s website as well as suggesting anything and everything that would allow CamRARE to reach more people in the Rare Disease community.

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.

Cambridge Rare Disease Network - CamRARE | Team 3

Emma Green

Chair and company director

Emma serves as the Chair of CamRare, where she provides leadership and direction to the board of trustees, ensuring they focus on strategic matters, oversees the charity’s activities, and uphold high standards of governance. With a background as a biochemist and research scientist, Emma brings over twenty-five years of experience as an executive in the biopharmaceutical industry, helping to deliver new medicines to patients with rare diseases, cancer and other therapeutic areas. As a champion for integrated patient and advocacy stakeholder engagement throughout the clinical development life-cycle, she has significant experience in working closely with patient groups.
Cambridge Rare Disease Network - CamRARE | Team 4

Dr. Tim Guilliams

Founder, trustee and biotech CEO

 Tim is a social entrepreneur passionate about delivering the next generation of therapeutics to rare disease patients in need. He is the Co-Founder and Chief Executive Officer of Healx, an AI company with a mission to repurpose drugs for rare diseases. He is the Co-Founder and was the first Chair of the Cambridge Rare Disease Network (CamRARE).

Cambridge Rare Disease Network - CamRARE | Team 5

Dr. Sarah Leiter

Trustee and medical doctor

Sarah was born and raised in Germany before moving to the UK to pursue a long-held ambition to study medicine. During her undergraduate training at the University of Cambridge she undertook a number of research projects and decided to do a PhD to further her passion for understanding the basic science underlying medical practice. She investigated the genetics and mechanisms underlying rare syndromes of low blood sugar in infants. Following graduation, Sarah decided to pursue a career in paediatrics where she regularly works with children with rare conditions. Her academic interest has evolved to the genomics underlying childhood cancers which are also rare.

Ilan Chaitowitz profile photo

Sarah Faircliffe

Trustee and Legal Director

Sarah is a Legal Director in an international law firm, where she advises clients in the life sciences industry on regulatory issues. She previously worked as a legal advisor at the European Medicines Agency, where one of her key responsibilities was advising the Orphan Drugs Committee. She also writes and presents on many regulatory topics, including the EU and UK rare disease frameworks. As a CamRARE Trustee, Sarah has a particular interest in supporting the Companies Forum.
Cambridge Rare Disease Network - CamRARE | Team 6

Sue Berry

Trustee and rare disease parent

Sue has been a trustee at Camrare since 2022. She joined as a parent voice from the Unique Feet group as her daughter’s rare genetic condition caused global delay and learning a disability. Sue works closely with the CamRARE team arranging events for the Unique Feet family groups, ensuring lots of fun events are planned. Sue has more recently become a trustee for Pinpoint. In her day time role, Sue develops packaging for Molton Brown working across multiple projects and managing lots of different stake holders.

Cambridge Rare Disease Network - CamRARE | Team 7

Dr. Gemma Chandratillake

Trustee and genomics education lead

Gemma is trained as a molecular geneticist and genetic counsellor.  She has a long-standing interest in rare genetic diseases, having used both fruit flies and worms to model alpha-1-antitrypsin deficiency and Niemann-Pick type C disease in the lab.

Cambridge Rare Disease Network - CamRARE | Team 8

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.

Cambridge Rare Disease Network - CamRARE | Team 9

Joseph Andrew

Trustee and Treasurer

Joe joined CamRARE to support as Treasurer as an ACA Chartered Accountant. With a background in finance from roles at PwC, Accenture and more recently in the fintech startup space, Joe will leverage more than a decade of experience to ensure a rigorous financial control environment and use his startup knowledge to help facilitate growth and expansion. Joe is passionate about helping make a difference to all the families and wider stakeholders impacted by CamRARE’s essential work.

Our volunteers

We are fortunate to have an army of volunteers who regularly help with our events, marketing and other tasks. Some, such as those below, have consistently supported us over a period of time on a range of projects.

CamRARE Volunteer Lydia Seed

Lydia Seed

Medical Student, University of Cambridge

Lydia is a medical student at the University of Cambridge. She has been volunteering with CamRARE since the start of the pandemic in 2020, where she helped design a Hospital Passport for rare disease patients at a time when families were anxious about hospital visits and teams were redeployed. Lydia has a Masters in Genomic Medicine and recently founded the Cambridge University Genomic Medicine Society. She is also Co-host of the educational podcast Genomics Unravelled.

CamRARE Volunteer Angela Lochmuller

Angela Lochmuller

Medical Student, Kings College London

Angela is a medical student at King’s College London with a masters in Genomic Medicine from the University of Cambridge. She has been volunteering with CamRARE since 2020, and is particularly enthusiastic about raising awareness about rare diseases among medical students and healthcare professionals.  Angela is part of the founding committee of Cambridge University Genomic Medicine Society, and co-hosts their educational podcast Genomics Unravelled with Lydia Seed.

Joe Clymer

Joe Clymer

Medical Student, Kelle University

As a 5th-year medical student, Joe’s internship with Cambridge Rare Diseases broadened his perspective on healthcare. Working with the team, he gained insights into rare diseases that weren’t covered in the medical school curriculum. With a keen interest in emergency medicine, Joe collaborated with CamRARE to develop the ‘This is Me’ passport. This tool enables patients with rare diseases to communicate their needs efficiently in emergency departments.

With seven years in healthcare, Joe has served as a healthcare assistant in post-op care and on a COVID ward during the pandemic. Before that, he volunteered in hospitals. Looking ahead to starting as a junior doctor in September, Joe is excited to continue working closely with CamRARE in any way possible.