BUILDING AN EFFECTIVE PH ASSOCIATION

Getting Started

Assess Your Resources

PHA Founders
PHA (US) was founded by four women around a kitchen table in 1990.

PH associations have been created around the world in a variety of ways – from three or four patients around a table to a handful of concerned medical professionals dedicating themselves to medical education and patient support. The kind of association you will be able to establish at first may depend on who you know and how much you have to invest in the operations of the group.

Should I begin with a support group or an association?

If you know only a few patients or doctors and you have limited time or money, you might decide that it is best to start with a support group and focus your work on reaching out to health centers and raising public awareness. Establishing a support group will help you get your work started while you build a base of supports and gain skills and experience in organizing. Support groups may also have fewer governing regulations.

If your health and resources allow, you might be able to establish an association. In some countries, PH groups have been established in connection with a larger “umbrella” group, as a sub-group of a national heart or lung organization, for example. Establishing an association might make your group eligible to receive donations.

Understand the rules and regulations

If you do decide to begin by establishing a full-fledged association, be sure to research the rules and regulations of your country. Learn how to register a group and what may be legally required to do so. Understanding the rules and regulations your country might have regarding association, and how these rules might benefit your organization and your donors, will help you prepare for your first years’ work by making clear what you may be able to do and when and how. Contact other associations in your country that have missions similar to your own and learn more from them about steps you will need to take and advice they might have on getting started.

Whatever your present circumstances, be patient if it seems you can’t achieve what you would like to right away. Every association has humble beginnings but with dedication and optimism they can grow.

Next: Getting Started - Starter Tip! >>
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NORD

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.