Patients - Swedish Orphan

DIALOGUE WITH PATIENT ORGANISATIONS

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.

Abbey S. Meyers

The National Organization for Rare Disorders (NORD) is a non-profit voluntary health organization 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 is a pioneering symbol of the unique partnership between the private sector, governments, researchers, and the patient community that characterizes 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 Swedish Orphan International affiliates throughout Europe, 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. This extraordinary progress would not have occurred without the leadership of Swedish Orphan International during the past two decades.

WHAT IS EURORDIS?
“Eurordis is an umbrella organisation for over 300 different patient organisations, which in turn represent more than 1,000 rare disorders in about thirty countries. Eurordis acts as a voice for more than 30 million patients with rare disorders throughout Europe.”

WHY DOES EURORDIS WORK WITH SWEDISH ORPHAN INTERNATIONAL?
“We have a shared need and benefit from exchanging information about the situations, needs and experiences of patients. By maintaining an ongoing dialogue, we can improve conditions for patients with rare disorders in Europe. We can also effectively increase knowledge of rare disorders as a general health issue with a high priority at EU level and among decision-makers and healthcare professionals”.
“Research and development is a key issue for patients, and we are particularly active in helping to develop innovative treatment methods and in making orphan drugs available to patients.”
“Swedish Orphan International is a member of the EURORDIS ROUND TABLE OF COMPANIES and actively participates in the seminars and workshops arranged every six months.”