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Telling Our Story

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Title: Telling Our Story


1

Telling Our Story Communications for Non-Profits
2
NIH Office of Rare DiseasesRegional
WorkshopJanuary 2005
  • Mary Dunkle
  • Vice President for Communications
  • National Organization for Rare Disorders

3
Some powerful communications tools we can use
  • Web Site
  • Publications
  • Media Relations
  • Informal Network

4
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5
Facts about NORDs Web site
  • 180,000 visits per month
  • Visitors include patients family members,
    medical professionals, researchers, teachers,
    social workers others
  • Between 10 and 20 of visitors are from outside
    the U.S.
  • Subscriptions licensing agreements extend our
    ability to raise awareness of rare diseases and
    resources

6
Why the Internet is Important
  • 100 Million Americans Are Online
  • ages 55 to 64 (16 million)
  • ages 35 to 49 (40 million)
  • ages 25 to 34 (21 million)
  • other ages (23 million) 

7
Internet trends
  • On any given day, more people are seeking health
    information online than are making visits to
    health professionals
  • --Pew Internet and
    American Life Project
  • People take the health information found online
    seriously
  • 70 percent said their treatment decisions were
    influenced by information found online

  • --JAMA Report
  • More older people are going online, and more than
    two-thirds (70) of the next generation of
    seniors (age 50-64) are Internet users.

  • --Kaiser Family Foundation  

8
The special role of rare-disease Web sites
  • Editorial in British Medical Journal (2004)
  • Many doctors still underestimate the benefits and
    overstate the risks of online
  • health resources. Supporting patients quest to
    learn as much as they can about
  • their health condition should be a guiding
    principle, not the exception, to quality
  • care. For the sickest patients, and those with
    rare diseases, online support
  • groups can sometimes be more important resources
    than physicians for many
  • aspects of medical care.
  • --
    Tom Ferguson, MD

  • Senior Research Fellow

  • Pew Internet and American Life Project

9
Writing for the Web
  • Know your audience
  • Keep it short The average visit to NORDs site
    is 2 to 2 ½ minutesand thats longer than
    average for most sites
  • Layer your stories Provide an overview with
    links to more in-depth information

10
Things every Web site should have
  • Statement of editorial policies (sources of
    information, reviewers, etc.)
  • Prominent display of update dates
  • Mission statement
  • Privacy policy
  • Contact information
  • Disclaimer for medical information

11
How to increase your Web traffic
  • Change copy frequently, especially on the home
    page
  • Provide interactive features such as quizzes
  • Offer an opt-in e-news service to create a sense
    of community
  • Submit your own site to the search engines
  • Exchange linksbut be selective

12
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13
Your publications (electronic and print) should
reflect your organization and its mission
  • Brainstorm with your staff and volunteers to
    clarify your message.
  • Be certain you are writing at a level your
    audience can understand.
  • Calculate your Fog Index to measure
    readability. (You can find instructions for this
    online just search on Fog Index.)
  • Dont try to mimic other publications. Find your
    organizations voice and face, and use them
    consistently.

14
Media relations on a budget
  • Create your own mailing lists using resources
    such as www.newspapers.com and The Writers
    Market guide,
  • Write your own press releases. If you havent
    done this before, you can buy an AP Stylebook for
    very little money or go to www.apstylebook.com.
  • Find the gold nugget that makes your story
    interesting or unusual. It may not be the most
    obvious thing.
  • It often helps if you can personalize a story.
    Dont just report numbers. Show how your disease
    affects real people in ways we all can
    understand.

15
When responding to press inquiries
  • Return calls promptly. Never go home at the end
    of a day with an unreturned press call.
  • Understand that the reporters motivation may be
    different from yours. You want to publicize your
    organization and its good work. He or she may be
    trying to see how it fits into a bigger picture
    or trend.
  • Correct inaccuracies (so they wont be repeated
    in future stories.)
  • Most important of all Be honest. Your
    long-term relationship with a reporter depends on
    this.

16
Some proactive things you can do
  • Send out a monthly or quarterly story ideas sheet
    to reporters who have shown an interest in your
    organization.
  • Personal contact may help in some cases (but
    dont become a pest).
  • Practice smart marketing. Target your press
    releases to reporters who are most likely to be
    interested in them. Avoid the shotgun approach.
  • Only send out press releases (and electronic
    newsletters) when you really have something to
    say. Mailings that are too frequent, or dont
    have much to say, are a turn-off.

17
Communications shouldnt be a one-person job Use
your informal network
  • Encourage your members to share information with
    their friends and business contacts.
  • Ask your medical advisors to help you reach out
    to the medical community.
  • Make sure your board members have the information
    they need to serve as ambassadors for your
    organization.
  • Update your staff and volunteers frequently.
    They, too are in key roles to raise awareness.
  • Believe in your organization. Your enthusiasm
    will be infectious.

18
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