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Date: 19 August 2018

Time: 10:15

Members of the Genome, Alpha-1 and Centre for Rare Disease teams

Celebrate Rare Disease Day

Story posted/last updated: 06 February 2018

Rare Disease Day will be celebrated in the atrium of the Queen Elizabeth Hospital Birmingham (QEHB) on 28 February.

The annual event aims to raise awareness of the work being done to diagnose, treat and cure rare diseases.  

One in 17 people live with a rare disease, many of which are inherited. There are an estimated 7,000 rare diseases. 

There will be a range of stands in the QEHB, where patients, visitors and staff can learn more about the work being done with rare diseases at University Hospitals Birmingham NHS Foundation Trust, which runs the hospital.

The first event was held on February 29 2008, as this is a 'rare' date, and since then has always been held on the last day of February.

UHB has a specialist Centre for Rare Diseases (CfRD), which has welcomed over 10,000 patients since opening in autumn 2015.

Michelle Grinham, Clinic Support Manager at the CfRD, which is located in the Heritage Building, said: “We’re looking forward to Rare Disease Day, to highlight all the work being done here at UHB.

“There are some really exciting developments in the diagnosis and treatment of rare disease right now, like the 100,000 Genomes Project, which is helping to give genetic diagnoses to some people with rare diseases.

“With interactive displays, posters and more, we hope there’ll be something for everyone to enjoy.”

People with rare disease are able to see all relevant specialists and the multi-disciplinary team in one visit at the CfRD, which is especially helpful for those travelling long distances, particularly if they also have mobility challenges.

Birmingham Children’s Hospital (BCH) will soon open a Children’s Centre for Rare Diseases, making the West Midlands the first region to have specialised rare disease centres across the whole age range.

For more information about Rare Disease Day, visit the website via the link below.

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