Earlier this week EURORDIS issued a press release calling on Europe’s health payers and suppliers to agree europe-wide prices for orphan drugs so that more people with rare diseases can access drugs they need to treat their illnesses.
The full press release can be read here.
Treatments for rare diseases exist which are safe sustainable and affordable in the real world but which are not available to all .
Currently not all aHUS patients access treatment in all countries or scope of use is restricted . Reviews of access, or of the process to get access, are currently in place in Sweden Scotland and The Netherlands.
Belgium has recently announced an agreement on price which allows an  increase the scope  of eculizumab  there to include dialysis patients.
France has renegotiated a price for eculizumab in that county.
Europe does not have to be restricted to European Union countries as a wider collaboration can permit greater buying power and more patients in scope if national health providers are then prepared to fund them.
The logistics required to achieve this desired outcome present  a great challenge but the Rare Disease Patient Voice has made its call.

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