How to start a patient association

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Start-up guide for new associations

Introduction

It might seem like an overwhelming task to start up a new PH association. The fact is, it is easier than one might think. And luckily, there is a wealth of experience in the European community and the PHA Europe organization to help with establishing new associations.

It really doesn’t take much effort to get a new organization up and running. Some associations started out with only one determined patient!

This guide gives a short description that can be used by new (and existing) associations and guide them in the right direction. For example, which procedures should be implemented first and in what order?

Feel free to contact Hall Skåra (leader of «The White Spot Program») or Gerry Fischer (department director of PHA Europe) if you have any comments or questions about starting up or running an association.

Names & Email addresses:

Hall Skåra: h.skaara@phaeurope.org (leader of The White Spot Program)

Gerry Fischer: g.fischer@phaeurope.org (department director of PHA Europe)

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.

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.

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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