BUILDING AN EFFECTIVE ASSOCIATION

Getting Organized

To Do List

  • Define a development period and temporary structure of responsibilities and procedures.
  • Evaluate your decisions and make time to adjust them, if necessary.
  • Determine who will be involved in creating the association and outline the roles and responsibilities of each member.
  • Hold a general assembly to allow others to help shape the organization.
  • Involve members as much as possible from the start.
  • Draft a mission and initial statutes.
  • Create formalized structures, such as medical advisory committees, or involve medical professionals and PH scientists in a less formal advisory capacity.
  • Establish record-keeping systems and keep careful records of income, expenses, meeting minutes, and the contact information of those involved in the group and on projects.
  • Turn to others who have experience for help in forming your association. Contact other PH association leaders and ask for suggestions or about ways in which you might help support the work that they are doing. Contact PHA at international@PHAssociation.org for additional support.
  • Learn about related organizations and non-profits in your country and review those charities’ materials, websites and programs for ideas.Seek expert legal or financial advice if you think it necessary.


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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.