Tips and Advice

PH patient associations are as unique as the patients themselves. Some are established by doctors hoping to improve patient care, some by families trying to make a difference for their loved ones, and others are started by patients themselves, through sheer dedication to finding and helping others who are in similar situations.

Whatever your circumstances, these tips and suggestions, collected from leaders around the world, will help you think of effective solutions.

"We began by doing all that was possible to help PH patients that wouldn’t cost anything or very little: give correct information; listen to their problems and if you have a solution that works, offer it; visit other patients during their hospital stays to show others that you ARE living with PH, but your life is as pleasant and full as anyone else’s. A million other things can be done with just a little money and lots of time and work." – AMIP Italy

Chapter 1: Getting Started

Chapter 2: Getting Organized

Chapter 3: Getting the Word Out

Chapter 4: Getting Down to Work

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. PHA does not endorse or recommend any commercial products or services.

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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.