BPSU - Rare Disease Day 2016

Rare disease day 2016

The British Paediatric Surveillance Unit hosted its third annual Rare Disease Day tea party. The event took place at the conclusion of the BPSU's Rare disease conference at the University of Birmingham on 23 February 2016.

Find out more about the BPSU Rare Disease Conference 2016

About Rare Disease Day

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 2016 is ‘Patient Voice’ and it recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

T-KASH - ASUK transition resources

T-KASH (Transition - Knowledge and Skills in Health) Launch

At this year's tea party, the young people of Alstrom Syndrome UK, Hear my Voice Youth Forum (HMV) presented their newly designed transition resources. The resources known as T-KASH (Transition-Knowledge And Skills in Health) are aimed at young people/families and professionals. They consist of ten logos and a visual map, which can be used in any setting e.g. Hospital, GP, Health Centre to signify that adolescent health care is more than just a consultation about a medical condition/s. The message is that young people, with long term health conditions, have full and active lives. 

They also expect healthcare professionals to be able to have wider discussions about areas such as vocational choices, confidentiality or how to develop life skills. The logos draw attention to ten knowledge and skill areas that these young people say they should be competent in by the time they transfer to adult health care. Developmentally appropriate adolescent health and lifestyle competencies are what the young people want to emphasize. The logos can also be given a tactile/braille finish so that visually impaired users can read them too.

It is hoped that the resources are used to underpin transition across adolescent health.

Everyone would like more KASH, so come along and build up your T-KASH!

More information about Alstrom Syndrome UK

Kion and young person of Alstrom Syndrome UK presenting on their experience of rare disease

Contact for further information

Jacob Avis, Research Facillitator
Royal College of Paediatrics and Child Health
5-11 Theobalds Road, London, WC1X 8SH
Tel: 0207 092 6174

BPSU tea party supported by:

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