BUILDING AN EFFECTIVE ASSOCIATION

Getting the Word Out

Starter Tip: Raise Awareness

“Do a lot of groundwork: Find out when various clinics have PH days (when most patients come in). Go to the clinic on those days, introduce yourself to new patients, give out brochures, write down phone numbers and email addresses, hang posters with the association’s information…”
PH Israel

Promoting the services of your association and education about pulmonary hypertension go hand-in-hand. The more people know about PH, the more likely they will be diagnosed in a timely manner, and the more helpful your association’s services can be to the community! Raising awareness can feel like a daunting task, though, when people have so many other things to pay attention to and worry about. Here are some ideas to help you jump in the to the important work of raising awareness.

  • Go to medical professionals

    Get medical professionals involved in your association’s work as early as possible. The best way to reach patients is often through their doctors, who first make a PH diagnosis. Contact the pulmonary, cardiology and rheumatology associations in your region or country and offer to provide information for their conferences and meetings. Plan to offer Continuing Medical Education (CME) courses at your meetings and events to incentivize the participation of medical professionals.

    If you have the opportunity to, advertise in medical publications. If that is not possible, create a flier to distribute to medical offices in your area. Ask your members to distribute those fliers to doctors in their areas as well. Educating general practitioners is just as important as educating specialists, since many people may see their GPs more often and therefore those doctors must know what symptoms to look out for and what to do if they suspect a patient has PH.

    Contact the medical managers of PH pharmaceutical manufacturers, PH treatment distributors (specialty pharmacies), oxygen distributors, etc, and ask if you have provide articles for their newsletters as well as attend and provide information at their conferences. Visit our medical resources worldwide page to see which drugs are available in your countries to help determine which companies may be active there.
  • Go it together

    Create joint opportunities with related disease associations. Discuss the possibility of including pulmonary hypertension in Rare Disease Days, which many regions hold annually. Create mutually beneficial opportunities to share resources and outlets. By developing positive relationships with associations dedicated to related conditions, such as scleroderma, you build your association’s reputation and plant seeds of possibility for collaboration down the road.
  • Go public

    Conduct public relations activities. Contact the local press, radio and TV stations and share your story and why PH awareness and research are so important. Read about how PHA-UK and PHA Austria have done this. Create an Awareness Day, Week, or Month. This can be as simple as establishing one table at a library, school or market, and distributing information and talking to people about pulmonary hypertension. Ask your co-workers to wear a particular color shirt (such as periwinkle!) on a specific day, or talk to your child’s school about coming in to teach his or her classmates about PH. Invite the media to cover your awareness event.


Next: Getting the Word Out - To Do List >>
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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.