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Presenting a clear and consistent message about your organization and its mission provides essential support for everything else you do—including advocacy, education, fundraising, and membership growth.  As non-profits, our challenge is to create effective communications on a limited budget.

The good news is that, with a balanced combination of new and traditional media, and a good understanding of your organization and its goals, you can do this.  Here are a few thoughts that may help:

Use a Good Mix of Communications Tools

The Internet and social media are incredible tools that allow you to communicate in a way never before possible one-on-one with your target audience.  They are definitely an important part of your communications toolkit.

However, many organizations now believe that it’s also important to maintain at least some print materials, such as a newsletter, in the mix.  Our recommendation is not to rely too much on any single mode of communications, but to employ several that complement each other, including:

  • Your website
  • Social media (see accompanying article)
  • Email group lists
  • Publications(newsletter, brochure, etc.)
  • Media relations

A Clear and Consistent Message

The most important thing you can do…before you assemble any tools…is to think long and hard about what you want to convey.  Have thoughtful conversations with your board, medical advisors, and members.

Consider basic questions such as: “What do we really want to accomplish?”  “What services do we provide that aren’t provided by others?”  “Why was our organization established?”

Once you feel you have a very clear idea of what your organization is and what it hopes to do, you can begin to draft “talking points” to share with everyone who might be speaking or writing about your organization.  Knowing what you want to say is important.  And consistency will help drive your message home.

Your Website is Your Face to the World

You don’t have to spend a lot of money on a website for it to be effective.  Some of the best ones we’ve seen have been created by patient organizations that are entirely voluntary.  The important thing is to make sure your website truly reflects your organization because it is your face to the world.

When creating a website, think carefully about your audience.  Who are your current members?  Who is not currently involved with your organization but should be?  Always think of your audience…their likely questions and concerns…when preparing content for your site.

And after you post content, don’t forget to monitor the results.  There are free tools such as Google Analytics that you can use to do this.  Keep track of your traffic, which pages are visited most frequently, and how long visitors stay on each page.

Your website is potentially your most effective communications tool but it requires regular attention.  Frequent updates and monitoring of effectiveness are important to use it to its full potential.

Rare Disease Patients & Families are Internet “Power-Users”

A recent survey of NORD members conducted by the Pew Internet Project and California HealthCare Foundation resulted in a report concluding that members of the rare disease community are “Internet power-users”.  The Internet is even more important for our patients and families because, in addition to providing medical information, it provides unique opportunities to connect with other people coping with the same rare disease.

Caution is necessary, of course.  But through trusted sources such as established patient organizations, it is possible for patients and their families to network online and share emotional support as well as helpful information about resources, the latest research findings, etc.

Writing for the Web

There are a few basic rules that may help draw return traffic to your website.  Know your audience.  Keep it short.  (The average visit to NORD’s website is two to two-and-a-half minutes, and that’s longer than for many websites.)  Layer your stories.  In other words, provide a brief overview for those who just want the facts, with links to additional information for those who want the longer version.

Things Every Website Should Have

  • Editorial policies (sources of information, medical reviewers, etc.)
  • Prominent display of dates (especially if you are providing medical information
  • Mission statement
  • Privacy policy
  • Contact information
  • Disclaimer for medical information

How to Increase Your Web Traffic

Change copy frequently, especially on the home page.  Provide interactive features such as quizzes.  Create an opt-in enews list.  Submit your own site to the search engines.  Exchange links…but be selective.


Many organizations that switched entirely to electronic communications are now moving back in a limited way to include some printed publications in their mix.  Some of your members may simply prefer to have an occasional newsletter to keep on hand.  It may help them feel connected and “in the loop”.

Your publications can be very simple and inexpensive.  A cover letter with a message from your president will help people feel that they know where the organization is going and what plans it is making.

Media Relations on a Budget

You can create your own media distribution lists, using various websites such as  Even if you don’t have a staff, designate one person on the team to be the primary writer of press releases.  You may want to invest in a copy of the AP Stylebook if you don’t have experience writing press releases.  Also, there are several online sources of information about how to write a press release.

Reporters are always interested in stories that have a “gold nugget”:  some helpful or surprising bit of information that your organization is best qualified to provide.  Also, stories about the lives of real people, and how they overcome challenges, are always inspiring to others.  If you have members willing to share their stories, that’s a good way to raise awareness of the challenges of living with a rare disease.

Person contact is important, too.  Keep a file of reporters and editors who have shown an interest in stories similar to yours.  Call them, or send an email, or even schedule a visit if possible, when you have a story of particular interest.  You won’t be bothering them.  They are always on the lookout for good stories.

When Dealing With The Press

Always return calls promptly.  Understand that their motivation may be different from yours.  Correct inaccuracies so that they won’t be repeated in future stories.  Most important of all:  Be honest.

Social Media

Social media provide nonprofits with a cost-effective way to reach a target audience.  They should be a piece of your marketing mix, and the approach you take should clearly fit into your overall communications plan.  It is important to pick the best social network for your organization and look at what your staff can realistically handle.

To maximize effectiveness, create a plan with clear goals, tasks, and responsibilities.  Always keep in mind your target audience.  And conduct periodic reviews of the quality of the relationships you are building, the number of people you are reaching, and whether the conversations are helping drive progress toward your goals.  This will help you identify where you need to spend more time or how you can maximize the effectiveness of your efforts.

Social networking can help you connect with your organization's target audience.  It can also be a platform for your advocacy initiatives, support your fundraising efforts, attract new members, and generate a "buzz" about your organization.  To get started, assign a staff member to take care of updating the page.  Young staff members, interns, or volunteers can provide valuable insight into the networks and how to use them most effectively.  Make sure you trust the judgment of the person to whom you assign this responsibility.  Ask yourself if you would let him or her be a spokesperson in other settings.

To start, find out who is already using these platforms.  If there are groups that have been developed for your organization that were not set up by you, reach out to the people who started them.  They may become committed supporters, willing to promote your content.  You want to find the passionate people in your space, listen to what they are saying, and talk to them, especially if they are already talking about you.

Look up your members to find out if they have social networking pages and invite them to join your page and become your friend.  Building these friendships will provide a pool of potential future activists, donors, and supporters.

Give thought to your social media profile, just as you would to a newsletter.  Make it creative with photos and titles that will attract your target audience.  Your content should be informative and updated on a regular basis so that others will come back often to see what is new.  Don't use the platform as a megaphone.  It should be a two-way conversation, engaging and open to other viewpoints.  Respond to requests and questions.  People who come to your page want to know that you are there and interested in their opinions.

It's important to remember that you can't control all the things people in the group will say.  Set up ground rules about what type of information may be discussed, and make it clear that you reserve the right to remove unwanted content and to protect the privacy of your users as necessary.  Remove inappropriate or objectionable posts promptly.  But don't try to censor the conversation if people post constructive criticism of your organization or other points of view.  Instead, use this as an opportunity to explain why you believe or do certain things.  Make it a true conversation.

Keep in mind that people are already talking about rare diseases--and your disease--on social marketing sites.  You want to be included and to strive to be a leader in the conversation.

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