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The GAfPA Policy Blog explores health policy news, reports, initiatives and events that inform patient-centered care.

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Patients in Europe have grown accustomed to health technology assessment bodies passing judgment on new medications. But in England recently the National Institute for Health and Care Excellence, or NICE, has taken the appraisal process one step too far.
With over 6,000 identified rare diseases, diagnosing a patient can often be like searching for a needle in a haystack. And with only a limited number of specialists and specialty medical centers, rare disease patients and their families often don’t know where to turn.
For patients with rare diseases, the path to diagnosis can be long and difficult. But, as a new policy paper from the European Alliance for Patient Access notes, that’s only one of several hurdles that patients face.