Super Session 3 – Patient-Centricity in Rare Disease

Super Session hosted by Norway, rising star of rare diseases

20 April 2022

16:00 - 17:00 Plenary Room
Super Session hosted by Norway, rising star of rare diseases

Super Session 3 – Patient-Centricity in Rare Disease

16:00 - 17:00 Plenary Room

In the EU, a disease is rare when it affects fewer than 1 in 2,000 people; in the US, when fewer than 200,000 are affected. Approx. 350 million globally are living with 7,000 different rare diseases, 75% of whom are children. Living with a rare disease requires life-long, complex, and challenging management. And since they are often genetic, rare diseases affect many more than the 350 million who suffer directly; generations of families, caregivers, and advocates are also impacted.

In Norway, a number of actors are contributing towards rare disease efforts:

-Academic and hospital groups are researching biology, genetics, and new potential treatments;
-Large industry is not only developing therapies and diagnostics related to rare diseases, but are also working with international programs to expand newborn screening, an area of rare detection in which Norway is a European leader;
-Clusters are supporting rare oncologic and non-oncologic diseases in growing their businesses locally and internationally;
-And companies are working with patient and community organizations from the earliest stages of development.

Our life science industry exists to make an impact, and, with greater research, best-in-class therapies, precise diagnostic tools and new technologies, we can. However, working side by side the patient community along every step of the R&D and commercialization journey is a must – doing so impacts what we understand about those for whom we are creating, and impacts our scientific and business decisions. In this session, we explore Norway’s approach to rare disease and its unique take on the role of patient centricity as a calibration for success.

Hosted by:

Norway

Norway

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