People and Roles

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An organization is made up of people, and those people take different roles. For those of you who have been running an organization for a while, especially if you've been doing it on your own, you know that one person can wear many different hats. Knowing what those hats are can sharpen your vision “your sense of what is possible for members and yourself. Let's take a look at some of the roles that advocacy organizations play and some of the pools you'll draw from.

Governing boards

Boards are groups of people that meet periodically to review information about an organization and make recommendations. A board can be a very formal group, complying with requirements and codes to support an organization's nonprofit status, and you need to keep in mind some of those requirements as your organization grows. Although it may be tempting to say "we're just a few parents trying to stay abreast of our kids' conditions," knowing a bit about how a governance board is constituted and run can save you time and simplify your operations as an organization ”especially if a conflict arises.


A governing board advises your organization, of course, but your organization may use other advisors as well, and even collect them into separate boards. The advisors we'll focus on will generally be scientific/medical advisors, or professional advisors. Organizing your approach to bringing in this kind of professional assistance will both make your use of those resources more efficient and signal to the professionals you approach that your organization is a going concern.


Staff is a big bucket and includes all kind of roles for an organization, from answering phones to stuffing envelopes to developing educational materials to raising money. Staff may be paid or volunteer. We are focusing on roles here, and you don't have to take money to be a bookkeeper or a fundraising director or a volunteer coordinator.

You may be tempted to think solely in terms of membership plus a few professional advisors and maybe a bookkeeper, but you can draw from many different pools. You can think of your member pool creatively, too, as a way to think about reasonable efforts from those who do work for your organization.


Your organization may have occasional or small-scale needs for paid work “the design and production work for a brochure, periodic money management or tax preparation, or event planning. These are opportunities to use freelance help, which may be available on a volunteer basis, for some kind of trade, or paid.


The initial efforts for an advocacy organization are contributed by volunteers, and many organizations are entirely volunteer “or nearly so “throughout their lives. One advantage of volunteers is that they're free! Unfortunately, people often feel free to drop out of work for which they are not paid. Even when no money changes hands, the connection, recognition, and support that is required to recruit and retain good volunteers is important to appreciate ”both to keep your volunteers happy and to do a good job of ensuring that volunteer coordination doesn't turn into an onerous chore.

Interns and Students

You may need short-term help to prepare for an event, to staff it, or to complete a big mailing. Depending on the work and the time frame, interns and students (from middle school on up) can be a great way to get work done. Students with assignments such as interviews in the work world or volunteer requirements, whether for school or for extracurricular activities, may be just the helping hands you need to get out a big annual mailing or to help keep an event running smoothly by staffing a table or helping to direct traffic. Interns are a good choice when a fairly straightforward project with a defined time period needs someone to focus on it, someone can do so with minimal direction.

You might luck out and find an intern with desktop publishing skills to design a holiday greeting, or a nutrition graduate student who can help develop a cooking activity for a group of kids with a metabolic disorder. However, interns and students are more likely to be looking for some training as well as some experience. Advantages of students and interns include the cost, but remember that they usually have a motivation beyond your group in particular, so be aware of the context of their participation, whether that means helping them verify their assistance or taking time to teach them tasks or be available for assignments they are completing.


Members, who may be working or deeply involved in childcare, and students, who have classes to attend and studies to complete, may not have the right blocks of time available. Retirees can be a wonderful resource to your organization, and they may bring a tremendous variety and depth of experience. Some groups, such as SCORE, have programs that match people with business experience in specific areas with people who need mentorship in those areas. All the same notes about working with any volunteer apply “be clear about the kind of support you need and the way your organization wishes to accomplish the goals involved, and respectful of the volunteer's contribution, even if you need to channel their energy.


Working with Partners and Stakeholders Toolkit, from the International Alliance of Patients' Organizations, provides guidance and recommendations on how patient organizations can develop effective, long-term partnerships with a range of stakeholders, including other advocacy groups, government, industry, and health care providers. Additionally, it includes materials to assist organizations in developing their infrastructure and capabilities. Toolkit covers awareness-raising, advocacy, strategic planning, fundraising and effective communication.

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