Our patients and their relatives are often members of a patient organisation. These organisations therefore have a very thorough knowledge of rare diseases and treatment strategies.
The National Organization for Rare Disorders (NORD) is a non-profit voluntary health organisation dedicated to the identification, treatment, and cure of rare “orphan” diseases. NORD is the consumer-driven patient group that is most responsible for enactment of the Orphan Drug Act which became American law in 1983.
Swedish Orphan International, one of the forerunners of Sobi of today, was a pioneering symbol of the unique partnership between the private sector, governments, researchers, and the patient community that characterises the worldwide orphan drug movement. The company is a model illustrating the role that pharmaceutical companies should have in addressing unmet medical needs.
Swedish Orphan International was initially created to import American orphan drugs to Scandinavian countries. It soon became obvious that Europe needed orphan drug legislation to promote development of treatments for rare diseases in Europe. Additionally, there was a need in the rest of the world for companies, based on the Swedish Orphan model, to make orphan drugs available throughout the world.
Today there are numerous Sobi affiliates throughout Europe, North America and in Asia. The European Union enacted its Orphan Drug Regulation in 2000, and today orphan drugs are reaching every area of the world because pain and suffering know no boundaries.