Website/Facebook/Forum

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Website/Facebook/Forum

Resources - How to start a patient association: 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.

We live in a computer age, and for most new patients the Internet is the natural source of information about PH. It is therefore crucial that a new association is present on the net with both a web page, a Facebook page and a discussion forum.

PHA Europe has a template for both web pages, Facebook pages and a discussion forum. It is important that this template is used when a Facebook page for an association is established. This will allow for campaigns that are run by PHA Europe to be automatically included in each association’s Facebook page. PHA Europe will be in charge of implementing the Facebook page, and new associations can contact Hall Skåra (hall_skaara@mac.com) when they are ready to have their Facebook page created.

A computer expert is also available to make a web page for the new association. Contact Hall and he will talk to the computer expert. Once contacted, the expert will send a template to be filled out. The new web page will be created based on the information given in the template. New articles can be written by the association and posted on the new web page. This will be implemented by using WordPress. The expert is available for training in order to enable the web masters of the new association to update their new web pages.

If pages other than the standard web pages is preferred, the association will need to implement them on their own. However, the expert will be available to edit the standard web pages as requested as long as it doesn’t deviate too much from the standard.

A discussion forum is often a great way to get patients to interact with each other. The computer expert can also help to set up an online forum.

In short: An online presence is crucial for a new associations. The computer expert is our social media specialist and will help with any IT related issues. He might also be able to travel to your country to have one-on-one training and meeting if requested.

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 […]

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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