PH is a rare disease and patients seldom meet other patients. It is therefore especially important that a patient meeting is organized. This should be done as soon as possible after the new association is established.

PH is a rare disease and before an association is established, it is unlikely that patients have had the chance to meet many other patients. A patient meeting is therefore crucial. In this way, patients will get a chance to share and exchange information with each other. Patients often form close bonds and become friends for life. The social aspect of the meeting should therefore be a central part of the meeting. A meeting that runs over several days (a week-end) is therefore recommended as patients will have a chance to socialize during meal times and outside the meeting agenda.

In order to educate the patient population and their care givers about the disease, research in the field and/or the latest development and treatment, one or several PH specialists should also be invited to the meeting. It is important to set off time for questions and discussions.

Another topic that should be given priority at the first patient meeting, is the psyhco-social aspect of living with the disease. It has been shown that patients often feel depressed by living with a chronic and serious disease and the ability to discuss this issue openly with other patients is important. This applies also goes for care givers. They too often have a need to interact and share their experiences with the other care givers. PHA Europe has an excellent patient and care giver’s survey and information material that can be used as a basis for discussion of this issue.

It might be a problem for new associations to locate patients in order to be able to invite them to the first patient meeting. It is therefore important that the first patient meeting is announced on the association’s Facebook and web pages in order for patients to discover this information while searching the Internet. In addition, doctors and nurses should be asked to distribute invitations to the patient meeting.

Pharmaceutical companies have been known to give economic support patient meetings. In order to seek economic support, both a detailed budget and agenda should be submitted to the pharmaceutical companies. PHA Europe can also provide economic support if necessary.