Welcome to

Cambridge Rare

Disease Network

Cambridge Rare Disease Network (CRDN) is a charity building a regional community to address the unmet needs of those living with rare conditions, their families and the professionals who work with them.  Our vision is for a united regional voice underpinning the development of services and treatments. 

Medical research and drug development have transformed the lives of people living with diseases that were formerly untreatable. Our challenge is to address the 95% of rare conditions which still have no treatment. 

We deliver events and activities that stimulate interest and awareness creating a climate of collaboration and innovation to address these unmet therapeutic needs. 

We support those living with rare conditions in our community to be at the heart of these events and to be part of this wider network.

Collaborating

Building and engaging a rare disease community

Educating

Sharing Cambridge expertise with the world

Supporting

Empowering stakeholders and those living with rare disease

Looking for the schools’ RAREsolutions competition?

OUR Activites

EDUCATING…

through educational and networking events: RAREfest, a public-facing interactive exhibition, talks and film festival; the Cambridge Rare Disease Summit, an acclaimed summit with international and UK- based thought leaders alongside powerful patient voices; a Rare Disease Day lecture and networking event; short evening and half day events throughout the year

COMPANIES FORUM meetings…

offering a neutral, collaborative platform for pharmaceutical, biotech and health-related companies to discuss common issues in rare disease drug development and to drive change

RESEARCH and PROJECT DEVELOPMENT…

identifying gaps in service provision and creating solutions. We have developed and incubated the Rare Disease Nurse Network (RDNN) project, now working independently

CHILDREN and FAMILIES…

attend our weekly activity group, Unique Feet

A PHILANTHROPIC COMMUNITY…

helps raise funds for CRDN

OUR AIMS

Networking

We aim to build a regional, user-led, rare disease community in Cambridgeshire by bringing together all stakeholder groups in a spirit of collaboration and a willingness to share and learn: people and families living with rare conditions; academics and researchers;  healthcare professionals;  businesses and charities.

We will ensure that the voice of people living with rare conditions is at the core of all our discussions, events and activities.

Education

We aim to offer high quality, engaging, thought-provoking educational events to address the rare disease knowledge gap. 

We will provide a platform for UK and international thought leaders and showcase the potential of the Cambridge Cluster – the University of Cambridge and vibrant biotech community. Events will have powerful patient voices and advocacy groups at their heart.

 

Service development

We aim to better understand gaps in service provision, support and knowledge for those living with rare conditions and the professionals who work with them. 

We will establish supportive forums and work with researchers to help identify these gaps. We will undertake long-term projects to develop services to address some of these needs.

OUR OBJECTIVES

As a registered charity our objectives are:

The relief of sickness of persons with rare diseases, in particular but not exclusively by the provision of support, advice and information for such persons, their families, carers and those working with affected individuals.

To advance the education of the public in general on the subject of rare diseases and related syndromes and to promote research in that subject and to publish the useful results.

Why a regional rare disease charity?

One in 17 people will develop a rare disease at some point in their lives – that’s 3.5 million in the UK alone.

Most of these diseases manifest in early childhood and many are life-limiting conditions.

Currently no regional community groups exist for rare diseases and individually their unmet needs are seen in isolation. We believe that collectively those living with rare conditions and their families can form a powerful regional voice influencing service delivery at every level and ensuring their collective needs are met. The Cambridgeshire pilot has the potential to become a model for many other regions across the UK. 

With recent advances in medicine and genetics, we’re more able  than ever before to diagnose and treat rare diseases. We can even see cures on the horizon. Patients are now living longer so it is important that health, education and social systems plan effectively to keep pace with these advances to ensure the best care.

It’s vital that we now work together to see these advances make the leap from the lab bench to the bedside and enhance quality of life.  CRDN brings together stakeholders from research, industry, business, healthcare and patient charities making a real and positive difference in the lives of people living with rare diseases.

OUR TEAM

Kay Parkinson

Kay Parkinson

Chief Executive Officer

Kay Parkinson was the mother of two children who were diagnosed with the ultra rare disease Alström Syndrome when they were aged 18 & 15, having had four previous mis-diagnosis. Both children died following heart and heart/kidney transplantations aged 25 and 29 respectively. She qualified as a lawyer in 1996 as a mature student, specialising in charity law.

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Jo Balfour

Jo Balfour

Events and Communications Executive

Jo is a founding member of  CRDN and is a steering group member. She manages the CRDN RAREfest event, our conferences, networking and educational events and is founder of the Unique Feet activity and community support group for children and their families living with rare conditions. She also supports the organisation of CRDN’s fundraising events.

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OUR FOUNDERS

Dr Tim Guilliams and Dr Jelena Aleksic

Founding Directors

CRDN was co-founded by Tim and Jelena who met during their PhD studies at the University of Cambridge. Both have since set up companies making an impact in rare disease diagnosis and treatment: Jelena founded and was CEO of GeneAdviser, making it easier for doctors to order clinical genetic tests, and Tim is founder and CEO of Healx, repurposing approved drugs to create new therapies for patients with rare diseases.

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.

Prof Alan Barrell

Prof Alan Barrell

Chair and Treasurer

Alan has spent his working life in or close to healthcare – both as technical practitioner in the NHS for six years in Clinical Laboratory Medicine, and more than twenty years in the Healthcare Industry – seventeen in senior executive positions with Baxter Healthcare International. From his Cambridge base, he is active worldwide working in education, business support and start-up – mostly related to health and life sciences.

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Dr Tim Guilliams

Dr Tim Guilliams

Founder and Trustee

Tim is a social entrepreneur passionate about delivering the next generation of therapeutics to rare disease patients in need. He is the Founder and Chief Executive of Healx and the Co-Founder and Chair of the Cambridge Rare Disease Network (CRDN), a charity aiming to foster dialogue and awareness around rare diseases in Cambridge, UK.

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Sarah Leiter

Sarah Leiter

Trustee

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 did her research under the guidance of Dr Robert Semple investigating rare syndromes of low blood sugar in infants.

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Prof Tim Cox

Prof Tim Cox

Trustee

Timothy M. Cox FMedSci, Professor of Medicine Emeritus and Director of Research, was elected to the Chair of Medicine in the University of Cambridge in 1988, and is a Life Fellow of Sidney Sussex College. Currently directing a laboratory research in the University Department of Medicine and Honorary Consultant Physician at Addenbrooke’s NHS Trust Hospitals, he was the Founding Director of the MB/PhD programme in Cambridge (1989-2014) – the first the UK.

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Dr Gemma Chandratillake

Dr Gemma Chandratillake

Trustee

Gemma is Education and Training Lead in genetics for the East of England. She 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.  In Feb 2012, Gemma joined the Stanford University spinout company Personalis, Inc., and developed a clinical genomic sequencing test for the diagnosis of individuals with rare disease.

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Alma Daly

Alma Daly

Trustee

Alma’s interest in Rare Disease was sparked by a presentation made by Tim Guilliams at a local Enterprise Tuesday event held by Cambridge University in 2016. Since then Alma has supported the charity with her financial expertise.

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THANK YOU TO our CURRENT MISSION Supporters

THANK YOU To OUR Supporters

CRDN Are MEmbers of

If you’d like to know more about Cambridge Rare Disease Network, or if you have any questions about our activities or partnerships, please contact us:

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Reg'd Charity Number: 1166365
Company Number: 9798317
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