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Rare Disease Symposium: the rare disease patient in 2030

Datum: 30-03-2017 - 30-03-2017

Locatie: Amsterdam


Rare Disease Symposium: the rare disease patient in 2030

These are both promising and challenging times for rare disease patients. On the one hand, more orphan drugs are in development than ever before, offering new perspectives to patients. On the other hand, the drugs in development are just the tip of the iceberg: with a total of 6000 existing rare conditions, there still is a long way to go to tackle the unmet medical needs. And even if we are able to develop treatments for all conditions, can we ensure patient access, too? If ongoing discussions on orphan drug prices result in a deadlock between manufacturers and payers, the unfortunate reality is that treatments will remain out of reach for patients.

Full-day event in Amsterdam

By organizing the Rare Disease Symposium in Amsterdam, we want to gain momentum and ensure that the rare disease patient in 2030 is far better off than he is today. That today’s promises will have prevailed and that patients will encounter less challenges than they do today.
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.   

Symposium house rules

During the Symposium, a number of strict house rules will apply. We will not be analysing the problem, we will not be assigning the blame and we will certainly not be discussing why proposed solutions won’t work. Rather than to hear what others should do, we want to know what we can do. Because only by engaging in a joint and solution-oriented dialogue, we will be able to shape the environment for the rare disease patient in 2030.

Do you also want to make a change? Register now for the Rare Disease Symposium, March 30 in Amsterdam!


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