BUILDING AN EFFECTIVE PH ASSOCIATION: 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.
Chapter 1: Getting Started
"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 2: Getting Organized
Chapter 3: Getting the Word Out
Chapter 4: Getting Down to Work