FEW PEOPLE AND FEW PH PATIENTS: THE STORY OF PHA NORWAY

PHA NorwayBy Hall Skåra, President

Norway’s population is a little more than 4.5 million citizens. To put this in perspective, this is about half the population of New York City! Pulmonary hypertension is a rare disease and with such a low population this means that the number of PH patients in Norway is very low. In fact, there are only twelve patients at the moment who use IV-medicine or take medicine administered subcutaneously. All in all, the estimated Norwegian PH population is less than 100. This makes PHA Norway a very useful tool for PH patients to locate each other, exchange experiences and make them aware that even though the disease is rare, there are other people in the country in the same situation as themselves.

Today, the Norwegian PH organization consists of about 25 people. These are patients or close relatives to patients. There are advantages of being such a small group. We get to know each other well and can be of great support to each other. On the other hand, the disadvantages are also numerous. It is difficult for us to create awareness in the general population for our disease, to apply political pressure, etc. It therefore made sense for us to connect to a larger organization. The Norwegian Heart and Lung Association (LHL) became a natural choice.

LHL has approximately 45,000 members. It was important for us not to get lost in this large organization, and LHL was sensitive to our concern. They made us one of their seven interest groups. In this way, we are an organization within an organization, and we are given a large degree of freedom. We have, for instance, our own web pages and discussion forum with a link on LHL’s home page. LHL takes care of all the organizational work and provides a great opportunity for us to reach out to the public. For example, they have promised to feature our small interest group in their next publication, which will be sent out to all their members and most hospitals and medical centers in Norway. In addition, they did not object to us signing a Memorandum of Understanding with PHA (US).

Due to the small population, Norway does not have many specialized PH doctors, nor a specialized PH center. However, Norway is a rich country (mostly because of the North Sea oil) and the medical facilities are excellent. Norway has a universal health care system, which is funded by taxes. This means that everyone is equally entitled to good medical services. We are fortunate in that there are no insurance issues related to medical coverage. PH patients in Norway receive free medical services and medication.

© 2009


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.