BUILDING AN EFFECTIVE PH ASSOCIATION

Getting Started

To Do List 

Support Group

  • Learn about the needs of patients, families, and medical professionals
  • Learn about laws and regulations governing the establishment of support groups and associations. Research what may be legally required of me
  • Research confidentiality laws
  • Register my group with the government as a charitable or tax-exempt organization. If I can’t do that, register as a non-profit group.
  • Contact leaders of other groups and begin developing relationships. Learn about ways that I can get involved in, support, or complement their work.
  • Contact groups with missions similar to mine and learn more about steps I will need to take
  • Decide whether it makes sense for me to start a support group or an association. Research related organizations and the possibility of establishing a PH group under a larger “umbrella” group.
  • Tell my doctor about my plans and ask him or her to share my contact information and tell other patients about my work. Talk to my doctor about his or her interest in supporting my work by reviewing literature, helping to produce resources, or representing our cause to the government.
  • Get to know the other patients in my clinic and look into holding regular meetings.
  • Contact local newspapers and media sources. Share information about PH and my experience with the disease.

Next: Getting Organized >>
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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.