The DEBRA UK team were out and about last week raising awareness of Rare Disease Day (Thursday 29th February).

Living with a rare condition, like epidermolysis bullosa (EB), means you are more likely to face misdiagnosis, treatment inequality and isolation.

By raising awareness of EB, we can make sure everyone gets the support they deserve.

 

Contents

• Raising awareness across the country
• Raising awareness on the radio

 

Raising awareness across the country!

 

Scottish Rare Disease day reception

On Tuesday 27th February, DEBRA’s deputy director of fundraising in Scotland, Laura Forsyth, spoke at the Scottish Rare Disease Day Reception held within the Institute of Genetics and Cancer at Edinburgh’s Western General Hospital.

The event was organised by Genetic Alliance UK, the largest alliance of organisations supporting genetic, rare, and undiagnosed conditions in the UK, and was attended by people living with a rare condition, their families, representatives from other patient support organisations, healthcare professionals, researchers, and academics. 

In her 10-minute speech, Laura spoke about EB and the work that DEBRA does to support people living with EB in the UK. She also shared some of the key challenges that people with EB face today, including the regional imbalance of specialist EB healthcare, and the lack of mental health support. Laura also shared her personal experiences of EB and the impact it has had on her own family; her cousin Adana sadly died from EB aged just 10 years of age.

Other keynote speakers at the event included Jennie Minto MSP for Argyll and Bute and Minister for Public Health and Women’s Health in Scotland, who also spoke at DEBRA’s Scottish Parliament reception last year about the need for patient voices to be heard for all rare diseases including EB.

We are very grateful to Genetic Alliance UK, for the opportunity to speak at today’s event and raise awareness of EB and DEBRA, to Laura, for sharing her family’s lived experience of EB and we welcomed the opportunity for further dialogue with the Health Minister who has previously shared her commitment on the behalf of the Scottish government to ensure that people living with EB get the healthcare support they need.

 

Weatherby's head office

On Wednesday 28th February, our Corporate Partnerships Manager, Ann, along with Emma, Tina and Maxine from our Retail team, hosted a pop-up shop, raffle and cake competition at Weatherby’s Ltd’s head office. DEBRA UK member, Heather Lowe, who works at Weatherby’s, gave a presentation sharing what life is like living with EB simplex. Thank you to Weatherby’s for hosting and for their support for the EB community.

 

Royal Holloway University

Our Digital Fundraising Officer, Kelly, joined Royal Holloway University at their Rare Disease Day event, raising awareness of rare diseases with GCSE and college-aged students from local schools. The annual event is held to inspire students who are considering health-related and science careers – perhaps the next generation of EB researchers! Thank you to Royal Holloway for inviting us and helping to raise awareness of EB.

 

Guys & St Thomas' Hospital

On Rare Disease Day, our Holiday Homes Manager, Katie Welsby, and one of our Community Support Managers, Jade Adams, visited one of the EB Centres of Excellence, Guys and St Thomas' Hospital to help raise awareness of EB.

 

Great Ormond Street Hospital

We also had a team who visited Great Ormond Street Hospital on Rare Disease Day to raise awareness of EB.

 

Raising awareness on the radio!

As well as raising awareness at events across the country, DEBRA Vice-President, Graeme Souness, and DEBRA member, Lucy Beall, who lives with recessive dystrophic EB, were interviewed on various radio stations to drive awareness of EB and create support for our 2024 BE the difference for EB appeal.

Listen to the interviews below!

 

BBC 5 Live

 

BBC Radio Kent

 

BBC Radio Lancashire

 

Talking health network