BUILDING AN EFFECTIVE PH ASSOCIATION

Getting Organized

Define Roles and Responsibilities

Determine who will be involved in creating the association and outline roles and responsibilities

If you are fortunate enough to have identified other patients, family members or medical professionals who share your goals and are willing and able to work, assess each person's level of interest and ability to commit to the work of the group. Some members may be very valuable contributors but because of health or other commitments, may have less time to be involved than others. Some may have time and ability, but have priorities that may limit their involvement; for example, some may be interested in investing more time in raising money for research than in patient outreach.

Everyone who is compelled to fight against PH, educate communities, and work toward a cure can play an important role in the association. Understanding the unique skills and circumstances of each of your founding members will help in the delegation of work and in effective collaboration. Medical team climbs Mt. Kilimanjaro to raise PH awareness

Hold a general assembly to allow others to help shape the organization

Though strong leadership can greatly advance an association, you will rely on the support and participation of those your association serves - your general membership and the PH community at large. Give your members an opportunity to provide their input, and respect their ideas. By keeping your members engaged at every step of the process, you will ensure that your association has a strong base of support and a membership committed to advancing your mission.

Get members as involved as possible from the start. Helping them feel invested in the association, and hopeful about the work they can do against PH, can make your association effective and energized. Remember to get family members involved, too! Setting smaller goals and creating more manageable projects will involve your members and attract volunteers. Consider holding a few small awareness- or fundraising events to get your activities started, raise some start-up revenue, and build interest in your group. If the opportunity exists, plan a conference in connection with your hospital as a way to bring patients and the medical community together to further the launch of your association.

Next: Getting Organized - Create a Mission Statement >>
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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.