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
(No Transcript)
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
(No Transcript)
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
(No Transcript)