BPSU - Rare Disease Day 2017

Rare disease day 2016

The British Paediatric Surveillance Unit hosted its fourth annual Rare Disease Day tea party on Thursday 30 March 2017 at the Royal College of Paediatrics and Child Health in London.

The event was an informal networking event that brings together patients and carers, healthcare professionals, researchers and policy-makers.

A mixed audience of around 80 delegates from a range of fields attended to hear presentations on rare childhood diseases and disorders.

This year we to had speakers including Dr Kiki Syrad from GOSH Children's Charity, Dr Larissa Kerecuk, Rare Disease Lead at Birmingham Children's Hospital. and Rebecca Stewart from Rare Revolution Magazine speaking on a forthcoming kids edition of the publication. Dr Lucy McKay from Students for Rare Disease also spoke on rare disease and its place in medical education.

A number of patient support organisations hosted stalls and a photographic exhibition from www.samebutdifferentcic.org.uk was displayed.

A copy of the programme can be found by clicking here (PDF, 414KB)

View photographs from the event

About Rare Disease Day 2017

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Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008. Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

The theme of Rare Disease Day 2017 is ‘research’ - rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.

Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. 

Rare disease patients and families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together to raise awareness of rare diseases through thousands of events all over the world. 

Rare Disease Day 2017 is also an opportunity to recognise the crucial role that patients play in research. 

Patient involvement in research has resulted in more research, which is better targeted to the needs of patients. Patients no longer solely reap the benefits of research; they are empowered and valued partners from the beginning to the end of the research process.

Supporting information

Contact details

Richard Lynn, Scientific coordinator
Royal College of Paediatrics and Child Health
5-11 Theobalds Road, London, WC1X 8SH
Tel: 0207 092 6173/4