Searching For The Answers and Finding What You’re Looking For In Orphan Drugs

In Orphan Drug Congress by Hugh Blackstaffe


From your personal perspective, what is the biggest challenge for the orphan drugs sector going to be in the next 12 months?

This is the question I have asked the dozens and dozens of people who have kindly agreed to speak to me over the phone or via email. This question is the most revealing question of all, because the answers you get are the most honest, wide ranging and informed. Yes, their responses may be subjective to their area of work, but you get an immensely open answer. It’s the kind of question that enables people to be totally forthcoming in their responses.

My current phase in the production cycle is titled the ‘Research Phase’ and this is where I begin to build the event. At the very core of the event is the agenda, and in order for the event to succeed, the agenda must be:

A: Relevant

B: Informative

And for my own personal objective when planning the event, I’d like to add in a third,

‘C: Progressively Provocative’.

This year marks the fifth Orphan Drugs Congress for Terrapinn and the first one for me. Terrapinn’s aim is to create high level, quality events, with the best speakers, delegates and production values. No one wants to experience “Death by Powerpoint” followed by average coffee. It’s dull and boring and and will not provide great networking opportunities.

I need to make my agenda as outstanding as possible, full of the best possible speakers who cover the most relevant and informative topics available. It must be challenging, it must be forward thinking and, it must offer the chance to find solutions rather than go over the same old issues and problems. This is what my event is all about, getting the right people in the right place to make the right decisions.

It’s very simple. Orphan drugs save lives. As a global community of health care related people we have a duty to help find the solutions to the thousands of as yet untreated and undiagnosed  rare diseases around the world. If I can put on an event that makes a difference somehow, then I’ve done a my job. This is why I put so much emphasis on talking to the right people, engaging with the people in the know, who sit right at the top of the ladder. They have the most up-to-date, relevant and researched information at their finger tips and are therefore well placed to tell me what I need to know, and ultimately what the World Orphan Drugs Congress delegates need to know.

Remember that really good music gig you saw all those years ago? Or that amazing birthday party you went to when you were a child? What is it that makes it stand out? As a Conference Manager/Producer, my role is to make the event as memorable, informative, exciting as possible, not only for the delegates but for myself. The event is my final piece of work, the thing that I’ve been working on for months and months, and if it didn’t deliver what I wanted or just didn’t work, then the only person to blame is me.

Following the ‘Research Phase’, then comes ‘Speaker Acquisition Phase’. This is when, based on my extensively researched agenda, I find THE very best people to speak at the World Orphan Drugs Congress. This is the big attraction for delegates. Who is going to be speaking? Who’s on a panel with whom? Who’s running a round table? Who will I get to ask questions to and network with? The aim with the ‘Speaker Acquisition Phase’ is to answer all these questions with “the best possible people”.

I want to make an event featuring the thought leaders, the game changers and the policy makers. I want there to be discussion and debate between panel members, I want there to be heated debate from all the representatives on stage, engaging with the audience members and creating an environment fuelled by thinkingsolution hunting and progress making. Stagnation doesn’t help anyone and it certainly doesn’t save lives. There needs to be development and new information offered. Stimulating debate leads to progress. That is why I want to find out what the big challenges are and that is why I speak to as many highly placed people as possible.

If you think you’d like to raise some issues or challenges you feel the orphan drug and rare disease community is facing or just want to get in touch, please drop me an email at

I’m also on Twitter @HBlackstaffe

For more information on the event, please do visit the website and have a look.

Thanks for reading,