Rare Disease Symposium: the rare disease patient in 2030

Patients with a rare disease live in times that are both promising and challenging. Therefore HollandBIO organises a Rare Disease Symposium!

Investments in research and development for rare diseases are at an all-time high. This has led to 122 medicines for around 90 rare diseases. The pipeline for orphan drugs looks more promising than ever, and offers new perspective to patients that have been without hope for too long.

But this is only part of the story. With a total of 6000 existing rare conditions, we recognize that there is still a long way to go to tackle all these unmet medical needs. And even if we can develop treatments for all conditions, can we ensure that patients have access? The unfortunate reality is that treatments can remain out of reach for patients if discussions on orphan drug prices result in a deadlock between manufacturers and payers.

During the rare disease symposium in Amsterdam, HollandBIO wants to make sure that the rare disease patient in 2030 will encounter more promise and less challenges. How do we speed up and improve the development of orphan drugs, ensure patients access to new and existing treatments, while also keeping healthcare systems sustainable?

We are not interested in further analysing the problem, in assigning the blame or in finding additional reasons why proposed solutions won’t work. We don’t want to hear what others should do, we want to know what we can do.

The Symposium’s program offers inspirational keynotes, several interactive sessions and plenty of network opportunities. The speakers list includes Elin Haf Davies, (Child Health Advocate and Founder of aparito health), Ronald Brus (MyTomorrows), Pete Chan (Raremark), Martin vd Graaff (Zorginstituut Nederland), and many others.

Please visit the website of the Rare Disease Symposium for the programme and registration.

The Rare Disease Symposium will be held at:

‘Het Rijk van de Keizer’
Joris van den Berghweg 101-111
1067 HP Amsterdam, the Netherlands.



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