Face To Face With The Real World: Tackling Rare Diseases and Orphan Drugs In The Board Room

In Orphan Drug Congress by Hugh Blackstaffe



Last week, Valentines day no less, I had the privilege of having my first ever international business meeting. Clad in my favourite suit (blue three piece, white double cuff shirt, blue silk tie in a half Winchester, brown brogues, dark blue socks, and completed with a silk white pocket square in the jacket pocket), I stepped onto the Eurostar with my boss and soon we were on our way to Brussels to meet with one of the major players in the orphan drug market, as well as one of the platinum backers for my event.

I didn’t really know what to expect, I didn’t really know what the meeting would be like. I knew who we were meeting, how long the meeting should be, and that it was very much focused on the research, agenda construction aspect. It was also the first time that the industry would have met me. So I had a fair bit to be worried about.

Luckily, wearing a well fitted suit gives me an inordinate amount of self confidence (I’m told my blue one brings out my eyes), so I had that going for me.

My leather business folder packed with printouts and handouts, two pens and not much else. Everything else was in my briefcase, such as my jacket, ready to be called on should it be required.

As it turned out, we British brought the British weather with us to Brussels, so it rained and the jacket was deployed. It got so bad that we were forced to utilise the Brussels underground/metro during rush hour, as a taxi could not be found, an experience I’d gladly not repeat again.


So there we were, in the board room, the secretary had brought a coffee and a tea (I felt I had drunk too much coffee already, so I went with tea…a heinous mistake as it transpired as nobody outside of the UK knows how to properly make tea, but that’s another blog post) and we were waiting on our hosts.

I read and re-read and re-re-read my notes, and in true Zaphod Beeblebrox fashion, I had chosen the most nonchalant chair to sit in. I knew the questions I needed to ask, and as I was the junior of the pair of us and it was my first proper business meeting, I asked my boss to lead and I would talk as and when I needed to.

I treated it like my research phone calls: 80% listening, 20% speaking. We were there for them, not the other way around.

Now, one of the big pieces of information I had uncovered in my research was the need for all stakeholder interaction. And what was most encouraging was that this was something that came up time and time again in the meeting, this need for them, as one of the biggest pharmaceutical companies in orphan drugs, was at the forefront of their concerns with the sector. It would have significant impacts on the future of orphan drugs and frankly, if it is not dealt with as soon as possible…let’s say the best time would be 12th-14th of November in Brussels…then the entire rare disease/orphan drug community, from patients to policies, is going to be in real trouble.

The realities of my role and the extent of which my ideas were achievable when put into the real world to be enacted hit me like corporate logo emblazoned baseball bat. That’s not to say what was being said was negative, but it was the first time I had ever put the semblance of an agenda to anyone who wasn’t on my team at work.

“Don’t include this, reword that, lose this, add that” were the words that came up several times when we looked at my agenda, which, in the grand scheme of things, is immensely helpful.

I am new to this area, I’ve not even finished my probation period (8 days and counting). So I am essentially in a position to do nothing but learn from those around me and then do things with what I’ve learnt, balancing it with my own feelings and creative input…because at the end of the day, I’m the one making the event which then gets sold around the world for people to attend…and frankly, they should because it’s going to be tremendous.

I need the criticism, the recommendations, the analysis and opinion. I’ve dialed hundreds of numbers in an effort to get exactly this and if I’ve not contacted you and you feel you would like to get in touch, please do give me a ring on +44 207 092 1221 or email me hugh.blackstaffe@terrapinn.com. The most important tools in my arsenal are asking questions and getting feedback…because it’s with this that I have an event and we can start making a difference. This is why I’ve dialed so many numbers, spoke to a lot of people and want to speak to many more.

I want my event to make a difference. I want my event to be a beacon of hope and change. I want everyone to see my event as the event to go to, an event of such scale and calibre they want to part with time and money to attend (unless of course you’re a patient group, then you get to come for free). And if so happens the way to make the event as outstanding as possible is to wear my favourite suit and hold meetings all around the world, then I’m happy to do so.

I mean, I sure do love my suits. The goal in life is to have one for everyday of the month.

However, I digress…because of the suits…and dreaming of the suits *SLAP*…ow…sorry, just hit myself to focus back on writing this blog…damn that hurt…I’m impressed…I’m stronger than I thought…I wonder if it’s because of *SLAP SLAP*…OWWWWW…apologies, normal service will resume…now.


So, I survived the meeting and got home safe and sound. The next challenge is getting a solid agenda together. Taking all the information, distilling it down into pure, 100% proof, knock-your-socks-off agenda goodness and then put it on the market for all to see. And obviously, like the best kind of drinks, it’s not going to be cheap. This is going to be an event of quality. This is is going to be an event to make things happen. This is going to be an event of refinement, class,  relevant information, focused on forward thinking, innovative content that is of the utmost importance to all delegates…by which I mean, all the stakeholders.

And I’ll be wearing my best suit…with a clean shirt each day of course, my mother trained me well.


So, I ask you. What happens now? I know what I’m doing next, but what are you doing to start making the changes we all need in this sector? What are you actually doing to make things better? No more board room talk, no more PowerPoint. This is the time for action, especially with Rare Disease Day happening on the 28th of February. And then, bring it into the big leagues this November at the World Orphan Drug Congress and lets get this whole sector future proofed, sustainable and game changing because otherwise it’s just going to fall to pieces.


Thanks for reading, please do look at the website or get in touch via email at hugh.blackstaffe@terrapinn.com or follow me on Twitter @HBlackstaffe.

On a side note, I always write my blogs listening to music, this week, as you may have assumed from the picture, it was the soundtrack to AMC’s ‘Mad Men’. Just a little piece of trivia for you.