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April 23, 2021

On Friday, 26 February 2021, Royal Holloway ran a virtual event for Secondary School years 10, 11 and 12 in honour of Rare Disease Day. The event consisted of live lectures, exhibitions, speed-dating talks and lab activities.

Our Marketing and Engagement Manager, Blayne, signed up for the speed-dating round and spoke to year 10, 11 and 12 students about Findacure. She only had seven minutes per school to deliver her presentation and rotated between seven virtual classrooms.

Blayne recaps her talk below!

Royal Holloway’s speed-dating round made me appreciate the skill needed to deliver a Findacure five-minute Lightning Talk!

Seven minutes is a tight window to cover the breadth of Findacure’s work, so I asked myself, “What’s in it for me?” What would teenagers care about and get excited about during my presentation? Once I asked myself that question, it became clear what to include in my talk. I needed to highlight our #RareMinds: Youth Campaign, The Student Voice Prize and our Rare Showcase series. These three projects speak to their age group and encourage them to get involved in our rare disease work.

I structured my presentation like so:

Findacure’s Empowerment Programme

I introduced Findacure as a UK charity uniting, empowering and transforming the rare disease community. I explained that we work directly with rare disease patient groups and provide free training through our Empowerment Programme. We help these motivated and passionate groups professionalise their work and grow their skillset in the following four areas.

#RareMinds: Youth Campaign

I chose this campaign because it speaks directly to their age group. The #RareMinds: Youth Campaign shed light on the challenges teenagers and young adults face when living with a rare disease. I spoke to the schools about what we learnt through the campaign and addressed how siblings of children who have a rare condition often feel unsupported. Rare disease siblings don’t want to burden their parents with “trivial” worries, so I assured any siblings in the room that their experiences and thoughts matter. We’re here to support you. You are worthy.

I also wanted to thank the best friend of rare disease patients, because they make all the difference. Not having to raise awareness of one’s rare condition alone lifts a huge burden off the shoulders of rare youth. Having that trusted friend to speak on your behalf and translate what you’re experiencing as a rare patient into plain, understandable English is a skill and comfort that must be applauded.

The biggest takeaway I wanted to instil within the students is that some rare diseases are invisible. Just because a person looks so called “normal” does not mean that they aren’t living with a rare disease. The lesson is that you never know what’s going on behind closed doors, so be kind to everyone and never assume. You never know when rare disease will touch your life, so be compassionate, supportive and ready to champion your friends and family.

The Student Voice Prize

The Student Voice Prize is a wonderful way for those interested in medicine and biological studies to become a rare disease advocate. Since university is the next step for some of the students, I took the time to explain the annual, international essay competition.

I revealed that The Student Voice Prize focuses on raising the profile of rare disease within the medical field, particularly with medical students, trainee nurses and scientists, since little time is dedicated to rare disease training in medical school. I made sure to highlight that students can be paired with a rare disease patient group to gain a first-hand account of what it is like to live with a rare disease to help them craft their essay. I hope they apply when The 2021 Student Voice Prize returns in the autumn!

The Rare Showcase Series

I always believed that I talked fast, but I didn’t talk fast enough to squeeze in the Rare Showcase series before my seven-minute timer went off!

I wanted to tell the students that our Rare Showcase series celebrates the innovative rare disease projects taking place across the UK. Our Showcase series brings rare disease stakeholders together and invites them to share their experiences, work, research and expertise with the wider rare community. By sharing and combining skills, we are building an unstoppable community that can bring about real change in rare disease.

All students are welcome and I encourage rare disease patients, siblings and friends to attend to meet others like them when the series returns this autumn!

The Rare Disease Day at Royal Holloway Speed Dating Event was so rewarding. It was a true joy to speak with Secondary School years 10, 11 and 12 about Findacure and how they can join our mission. I would love to come back next year and do it all again hopefully in-person!

A huge thank you to:

Royal Holloway
• Rafael Yanez
• St Catherine’s
Cardiff High
• Ryde
Saffron Walden
St Bernard’s Catholic Grammer School
• Richmond & HSDC Alton
Coloma Convent Girl’s School

Rare Disease Day at Royal Holloway Speed Dating Event

by Blayne Baker time to read: 7 min