BUILDING AN EFFECTIVE ASSOCIATION

Getting the Word Out

Let Your Country Know: Hope Has Arrived!

“Make sure your organization is reachable, make contact information readily available, put information about it in regional press and at specialized clinics.”

Be memorable

Consider creating a logo to help identify the association. A unique logo that is representative of your organization will create a visual recognition of your work and solidarity among your members. Think of a logo that will suggest what your association stands for, and who it represents, so that people who are unfamiliar with pulmonary hypertension will have an immediate sense of what you are working toward. Because new associations must work extra hard to make themselves known to the national community, a logo can help identify your group and lend credibility.

Examples of logos from PH associations:

 

Be everywhere, easily!

The first place many people go for information is the Internet. Even a small association with few funds can create a web presence that lets people in their country know about their work and learn about PH. An association website is an easy and effective way to raise awareness, reach out to potential new members, and provide the latest in PH information. It’s also a quick way to make connections with associations in other parts of the world and to enhance the resources you are able to provide to your community by linking to other association websites and informational pages. There area  number of associated disease associations and medical professional associations that can be organized on your website to serve the patient population in your country, such as the European Society of Cardiology, the World Health Organization, or the American Thoracic Society.

Wherever you publish information – either on the web or in print – be sure to have the information reviewed by a trusted medical professional. Every PH patient is different, and what applies to some may not hold true for others. Medical review will ensure that the information you share is safe for all patients.

Be creative

Rely on your own creativity and ingenuity to assess the needs of the PH community in your country and determine ways to reach out to them. If you have a website, why not consider expanding your reach to those without computers by creating a newsletter. Include news from the PH community, ask patients to share their stories, share tips about living with PH and information from medical professionals about the disease. Even a brief one or two page newsletter can be a great resource for your members and for prospective members! Consider the unique talents of your members and ways to get them involved in many different capacities so that they can be effective even if they are constrained by health, time, or other responsibilities. Perhaps there is a member of your group who is especially out-going, for example. Asking him or her to host an “information hotline” or make personal phone calls can be a great way to serve and engage people. (Learn how PHA trains our volunteers).

Next: Getting the Word Out - 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.