BUILDING AN EFFECTIVE ASSOCIATION

Getting Down to Work

Build Support

It’s often said “It’s not what you know; it’s who you know.”

Rely on personal contacts

In many cases, your best resources will be your friends, neighbors, colleagues, and family.

Reach out to your personal contacts, and ask your members to reach out to theirs, for non-monetary donations such as prizes, refreshments, and entertainment.

There are many ways that people can help support your work using their own skills and talents. These opportunities not only enable you to funnel your association’s funds into other priority areas, they also help to create strong ties between your association and members of your community and encourage people to feel invested in, and engaged with, your work – even if they are not themselves PH patients.

Shoot for the stars

In some countries, public funding may be available from health insurance companies, ministries of health and other organizations. If medical professionals are part of your organization, research grant funding may be available to finance such things as patient registries. Research organizations and grant opportunities in your country to see what is available and what you must do to be eligible to receive funds.

Create allies from corporate contacts

Build relationships with the pharmaceutical companies in your country. Because they serve the same populations your association will, they may sponsor a number of your initiatives. If your association is not registered, and cannot receive charitable money donations, the pharmaceutical representatives in your area may be able to make donations in the form of ‘in kind’ gifts, by printing copies of your newsletter, for example, or providing refreshments for your support group meetings.

Once you are registered, you can approach the companies with specific sponsorship opportunities. Be sure to plan thoroughly, though, before approaching a pharmaceutical company for money. You want to be sure to honor the relationships you have built with companies in your area by being prepared and specific. Have one or two projects or programs in mind and outline clearly what the project will be, how funds will support the project, and how you will acknowledge sponsorship. Keep the following in mind when building relationships with pharmaceutical companies.

Work with several companies

There are a number of pharmaceutical companies serving PH patients and it is valuable to approach all of the companies that serve your country. Companies may vary in their sponsorship structures or procedures, in the amount of sponsorship they can offer, and even in the types of projects they are most interested in. Having the support of several pharmaceutical companies also ensures that the public doesn’t perceive your association as being in the hands of one particular sponsor.

Get it in writing

Draft and sign an agreement with sponsoring pharmaceutical companies that spells out your association’s independence and the transparency of the sponsorship. Companies will appreciate having a record of expectations and agreements and will protect you in case of misunderstanding.

Create structures to engage representatives

As your association’s reputation grows, and as you build strong, reciprocal relationships with pharmaceutical representatives in your area, those companies will be able to support your association. Consider creating a committee on which all of the companies can be represented. This will engage representatives and allow for discussion of common goals to advance the cause in a non-competitive environment.

Next: Getting Down to Work - Engage Volunteers >>
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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.