Subscribe Now

By entering these details you are signing up to receive our newsletter.

Winter 2016 Ultra-RARE

Ultra and nano rare diseases

Rare Revolution (pagesuite.com)

Rare Revolution (rarerevolutionmagazine.com)

Top tips for speaking about living with a rare disease

Public speaking is a common phobia for many people – but it doesn’t have to be! I realised I really enjoy speaking in front of audiences of any size. 

During my time at University I had no issues in delivering a presentation of my work. Just after University, I had the pleasure of my first best man duty – it was a fantastic experience to plan my speech with the right mix of humour and emotion. 

Since these experiences, I’ve been doing talks for Great Ormond Street Children’s Hospital about living with my ultra-rare disease and the years I spent using the hospital in my childhood and teenage years. 

I’m now lucky enough to be doing regular talks at rare disease conferences, again, speaking about various aspects of life with an ultra-rare disease. 

As we’re still in the mists of the coronavirus pandemic, so there won’t be many physical presentations taking place for a while, but certainly some remote digital alternatives. Either way, now is a great time to brush up on your presentation skills. 

I think one of the most common fears is that you’ll freeze when you’re doing your presentation, but hopefully with some of my tips – you’ll knock it out of the park. 

  1. Know your audience – Your presentation should reflect those you’ll be speaking to. Quite often I’ve found pharma audiences are more interested in your experiences of living, rather than all the science behind your condition. 
  2. Limit the number of slides – Authenticity is far better. I used to write almost word-for-word by slides for what I would say. I’ve realised this isn’t the way to do it. Most people would far rather the slides be kept to a minimum and be sure to include some visuals – rather than just all text. 
  3. Note cards – These have been my saviour. You’ll soon realise how your brain remembers things. I personally use colour and a few words – this gives me the memory jog to start each slide. 
  4. Humour – Humour is massively under-rated. Just because a presentation is serious about talking your health, it doesn’t mean you can’t add some humour in. I’ve found it an effective way of helping people to remember me and my presentation. 
  5. Be open – Talking about your rare disease is extremely personal to you – but be sure to say how it really is. Life with a rare disease is tough – it’s important to show you’re human and be open to explain how depressing and frustrating it can be, but also be sure to share some of the brighter moments and some of your proudest achievements. 
  6. Practice, but don’t overdo it – For some of my earlier presentations, I think I was ‘over-prepared’ and to the point where it almost comes off as too scripted. I think I’ve found the balance now of being prepared enough that I can do the presentation with it somewhat memorised. Practising in the mirror, on Skype and the phone to a friend are great suggestions – your voice sounds different on the phone, laptop and in person. 
  7. Stay up to date with some of the key trends in rare disease – By being up to date with the latest news in rare disease, it’ll potentially help with some of the questions that may arise in the Q&A and also if there’s a networking session at the conference. 
  8. Know the set up – How long will you be speaking for? Will there be a Q&A at the end? Do you need to bring your presentation on a memory stick? It’s important to speak with the organiser to get these answers beforehand so you don’t have any surprises on the day. 
  9. Finish the presentation with something thought-provoking – Some of the best presentations I’ve seen are the ones that made me think about it for days after. Try and think of something to add at the end of your presentation that’ll really make the audience take in what you’ve said and something for them to ponder on. 
  10. Have fun – Presentations don’t have to be scary! It’s a great opportunity to speak to a room full of people who are really keen to hear your story. Embrace the moment and try to relax and enjoy it. Your confidence will naturally grow with the more presentations you do. 

Ultra and nano rare diseases

Ultra and nano rare diseases

Ultra and nano rare diseases

Skip to content