BUILDING AN EFFECTIVE ASSOCIATION

Getting Down to Work

To Do List

"Start small and work up, don't expect to start with a lot of people. We [patients] are few and far between, so anyone wanting to start a society needs to have the time to commit themselves, as a lot comes from one or two key people. Things will then branch out, but one must have a lot of motivation to keep the 'ball rolling'."
- British Columbia PH Society
  • Do what you can with what you have.
  • Support your members as cost-effectively as possible.
  • Hold patient meetings at a member's house or at a conference room in your PH clinic or hospital.
  • Diversify your fundraising efforts.
  • Reach out to your personal contacts for non-monetary donations, such as prizes, services and goods.
  • Sell merchandise branded with your organization's logo and address.
  • Hold seasonal special events
  • Assess your association's expenses and sources of income and determine whether your group should collect membership fees.
  • Research organizations and grant opportunities.
  • Build relationships with the pharmaceutical companies in your country.
  • Find ways to thank and appreciate your volunteers.
  • Involve members in as many ways as possible.
  • Assign roles quickly and continue to recruit new volunteers.
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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.