Building an Effective Association

Getting Organized

Starter Tip: Learn From Others

“PHA and BCPHS were the two organizations that offered tremendous assistance while we were in the process of setting up NBPHA. Liz McCall of BCPHS was a great help and provided guidance as to how she began and registered an organization here in Canada. PHA provided us with tons of literature and information to help us get our organization off the ground.”
New Brunswick PH Society


At first, it might seem like you are alone in your fight against pulmonary hypertension. Being willing to ask for help or ideas, and being creative when thinking about who might be helpful, will help you quickly realize that you don’t have to go it alone! Don’t hesitate to turn to others for help or encouragement. Right in your own community, you will likely find valuable sources of information on anything from structuring an association to types of materials that should be produced. Helpful people are in your backyard and everywhere around the world! Here are some quick go-to ideas to help you build resources and partnerships.

PH-specific associations and resources

  • There are more than fifty pulmonary hypertension associations established around the world. A few are featured in this guidebook, and each and every one of them has valuable experience and ideas to offer. Contact other leaders and tell them about the work you are doing in your country. Ask for any suggestions they might have, or about ways in which you can help support the work that they are doing.
  • Pharmaceutical companies that manufacture and distribute PH therapies may be good resources for funding and awareness-raising. If you aren’t sure which companies are involved in your country, review the Worldwide PH Therapies list.
  • PHA has a wealth of printed and online materials that we are eager to share with other associations. Contact the PHA International Services department at International@PHAssociation.org. We are also happy to share our own long-term experiences, discuss the challenges you are facing in your country, and support the work that you are trying to do there. PHA staffs a full-time international services staff person who is always available to help you find solutions, enjoy international PH opportunities, and make connections with other association leaders and medical professionals around the world.

Other non-profit organizations

All manner of disease-related organizations may be helpful to you, as well as medical associations such as those representing cardiologists and pulmonologists. Many disease organizations face similar challenges, from patient isolation to paying for treatments. Learn about such organizations in your country and review those charities’ materials, websites and programs for ideas. If appropriate, contact the leaders of those groups and request permission to adapt resources for PH patients and offer to collaborate on future projects.

Professional help

In many countries, organizations have been established that offer resources and training about running effective non-profit organizations. If you have never started or managed an association before, consider seeking professional development in this area. If you have – or can raise – the financial resources to do so, you might seek expert legal or financial advice on setting up a non-profit association. Making sure that you’ve done things correctly from the beginning can give you peace of mind and legal protection down the line. Use your contacts and those of others in your association to identify those who might help you for a reduced fee or for free.

Next: Getting Organized - To Do List >>
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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.