Helping Your Membership Help Your Group

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One of the greatest resources an organization has is its membership. This membership can be defined in a number of ways, and it is probably a good idea to examine membership as both a goal and a resource.

Most of the time, when new organizations think about membership, they think about building it. Getting is a key activity of your work. Your members are also a resource and not just for the donations they might contribute. They are a pool from which to draw volunteers, expertise, and networking connections that might be critical to advancing your mission. In addition, your members can participate in studies on your condition. A large collection of affected individuals can be a tremendous asset for an organization seeking to initiate or promote research. Individuals can donate samples of blood and tissue, and they can share information, such as how the condition manifests itself and progresses, therefore conveying information about the natural history and/or epidemiology of the condition.

How will you define membership? Some organizations allow only affected individuals to be members, others extend that to include family members, and still others include anyone who wishes to be a part of the organization.

Consider how you will structure membership. Some organizations charge a membership fee and others do not. Both methods appear to be useful. Organizations that charge a membership fee describe members' sense that they are investing in the organization. In addition, they believe it builds a commitment to the organization. The revenue may help to offset costs of a newsletter or website. However, many organizations find that the amount received by membership fees does not do much in the way of offsetting these costs. Some organizations have a flat fee of $25 or $50 annually. Other organizations have a sliding scale. Almost all organizations allow people who cannot afford the membership fee to join for free, or on a scholarship. For legal purposes, the membership should be defined in the event that a vote of the membership is required, by some states, for legally changing the name of the organization, for example.

Other organizations charge no fee. Their rationale for this is founded on a number of considerations. Some have a philosophy that they should not charge for help and information. Some reason that as the value of the organization is understood, the members will annually donate more than a membership fee of $25 or $50. A number of organizations report that this seems to be true. If members pay an annual fee, they may be less inclined to make a more substantial donation, believing their duty is done.

Genetic Alliance recently shifted from a fee-based membership to a free membership. It was not possible to be as inclusive as we wanted to be without offering free membership. It is our hope that those who can afford it will pay something, and those who cannot will have their membership and services sustained through the support of others.

In addition, a number of organizations appreciate that a large membership can be important for research, for better understanding of the condition, and for important campaigns such as lobbying.

The primary activity of any organization should be establishing and maintaining contacts of all kinds, everywhere. Networking is the most vital activity you can engage in it will be a key to many doors. At a neighborhood barbeque, at a play, or at the gas station, you might meet someone who knows someone or something that can help you and your organization. Always have business cards handy, even if they are home-printed.

It is important to understand an individual's motivation for joining your organization. Understanding this will help you to understand the needs of your constituency. We'll get into that in the "sustaining" section. People join advocacy organizations for a number of reasons primarily for information, support, or to participate in research.

Individuals seeking information will look for you, but they won't do your work for you. You need to ensure that information about your organization is readily available. Individuals seeking support might not aggressively look for you. Once again, you need to be available to them perhaps less subtly than for individuals seeking information.

Individuals seeking support can find out about your organization from other people who support their health care providers, mental health professionals, or caregiver individuals in their lives. Connections with those providers can be used to support educational functions of your organization. Make your target audience broad. Family and friends of affected individuals will contact you, in addition to health care providers and members of the media. You want to be ready to give information to these people as well.

You can reach out to potential members with the aid of traditional media outlets, contact with professional organizations, community organizations, electronic media, and umbrella groups that support advocacy organizations. Recruiting and sustaining membership has many dimensions. Read on for details about building the contacts you need for membership and communicating with your members to keep them interested, committed, and motivated.


There are many different ways to define “membership”; the goal is, to figure out what works best for your organization.

Dean Suhr

MLD Foundation

“501(c)(3) is a tax/operational designation made by the IRS on a charitable organization (company) formed under a specific state charter. Members are allowed in charitable organizations with 501(c)(3) designations - this is the historical model. They are not "owners" or "shareholders" (there is no such thing with a non-profit), just (typically) Members paying dues with rights as specified in the Bylaws.

Even if your organization does not include membership in its Bylaws you can have members paying dues or not paying dues (lower case M with no Bylaw inspired rights - just what benefits you give them as a matter of practice). In our case we don't call anyone a "member" and don't ask for any annual donation, but we do ask for a bit of disease and family information before we put them into the inner circle of family connectivity. So in practice, not by law, we have a sort of member - we just don't call it that.

Traditionally Members paid an annual fee, received some special status, access, and sometimes voting privileges for organization officers.

I think the membership question boils down to two items/questions: 1) Do you need the membership dues to sustain your organization? (A financial question) 2) Does membership provide enough benefit to the members for them to make the effort/expense to become a member? (An operational/organizational/mission question)

In short, is membership a financial issue or an access/service issue?

We have always believed that the families are those we serve and in our very rare disease they should not be our source of revenues. We do not want any hurdles preventing families connecting with us to be served. And frankly, the math never worked for us anyhow ... our community is too small and the potential negative exclusionary tradeoffs for a few thousand dollars of income didn't make any sense, i.e. there was no leverage in having membership dues.

And of course today, in the Internet age, families will gather to support each other and find the information another way if we are not forthcoming, open, welcoming, and including.

I think the dues paying model always has been a tough one for rare diseases and in the Internet age it's not sustainable. It might work better for chronic conditions and larger budget organizations where there is higher leverage with lower participation, but even then, it depends on your mission and the value to the potential members. Personally, I think it's a dying model in most cases. And where we do see it is "successful" I suspect the low dollar level members are enticed with "gifts" that reduce your net income and the higher-level donors, if you nurtured relationships with them, would be donors anyhow.”

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