Scientific Committee

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Scientific Committee

Resources - How to start a patient association: Scientific Committee

In order to have medical credibility, it is important that a scientific committee is establish together the new association. One PH doctor might be sufficient and help review information published online, brochures, etc.

The founding members of an association often have good knowledge of the illness pulmonary hypertension. They might be patients or also often care givers. However, it is important to join forces with a medical professional that is a specialist in PH. (A PH nurse or doctor.) It can often be sufficient with one person, but a committee consisting of several professionals is recommended. These professionals would make up what is called a scientific committee.

The role of this committee is to guarantee that everything that is written on the association’s web pages is medically sound. An expert is also needed to proof check any medical written material that is sent to the members or any brochures. Furthermore, the committee can also be used to answer medical questions that members might have or monitor web forums.

All in all, a scientific committee gives an association medical credibility.

Registration

It is important that a new association is correctly registered as a non-profit organization in your country. Some countries have decided to be part of a bigger association (e.g. heart and lung associations) while most become an association on their own.

Statutes

Statutes need to be written in order to register an association. PHA Europe has written some statutes that can be used as a template. However, remember to double check the requirements of statutes in your given country before adjusting the template.

Business plan

To ensure direction and sustainability, a simple business plan should be created. This outlines the goals of the association, planned activities, funding needs, and how resources will be used over time. When starting a new patient association, it’s important to have a clear idea of what you want to achieve and how you plan to […]

Website/Facebook/Forum

Most patients are active on Internet. A new association needs to have an online presence, and PHA Europe can help. They can set up both a web page, Facebook page and an online forum for the new association. This is a simple procedure that requires that a template is filled in with country specific information.

Brochure

It is important to have a brochure describing the association. This can be distributed by, among others, PH nurses to newly diagnosed patients in order to inform them of the existence of the association.

First patient meeting

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.
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