JO BALFOUR

Managing Director

LESLEY BOOTH PhD MBE

Deputy Director

Lesley supports Jo in the day-to-day management of CamRARE. A social scientist researcher, she has twenty years experience of working with hard-to-reach groups, and is passionate about education and providing opportunities to educate those who feel excluded, or, exclude themselves from the very systems that should support them. She has an unrivalled understanding of patient and public involvement and engagement processes and growing partnerships with clinicians, researchers and patients.

Vaila Morrison

Social Media Manager

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.

DR. Gemma Chandratillake

Chair 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.

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).

Sarah Faircliffe

Trustee and Legal Director

Sarah works as a Legal Director at Bird & Bird LLP, within the firm’s Life Sciences and Healthcare Group. With over twenty years of experience, she advises clients on EU and UK laws, guidance and codes of practice concerning the regulation of medicines, medical devices and related areas. She previously spent 10 years as a Legal Adviser at the European Medicines Agency, advising the EMA and its scientific committees on a wide range of legal issues.

MRS SUE BERRY

Trustee and rare disease parent

Sue is a rare disease parent. Her daughter, Charlotte has Coffin Sirius Syndrome. Sue’s involvement with CamRARE began in 2015 when she had a speaking role at our  first RAREsummit.  Charlotte and her family are keen members of CamRARE’s  Unique Feet rare disease community group  and support with community fundraising for CamRARE. 

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.

JON GREEN

Trustee and biotech COO

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.

Heather Turner

Policy Analyst,  PHG Foundation

Heather is a policy analyst working at the PHG Foundation where she supports a diverse work programme centred around genetics and health. During her Masters studies in Genomic Medicine, she developed a passion for community engagement and awareness of rare disease. She has supported several CamRARE events, including RAREfest, RAREsummit and the Rare Disease Theme at the Pint of Science Festival.

Angela Lochmuller

Medical Student,  King’s 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.