2. CAN RARE ROAR?
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• Inherent challenges of rare disease groups impact ability to
advocate effectively:
−small membership base, volunteer-driven
−broader disease community is also small, not connected
−those touched by rare disease have little extra time or energy
−often a number of unmet needs to address – where to start?
How can a rare disease group amplify their voice, increase
awareness, and most importantly, generate action?
3. ARE LIKES AND FAVOURITES ENOUGH?
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• The Internet can be an effective medium to allow patient
groups to amplify their voice and grow an effective
advocacy base
• Engaging people not connected with a rare disease is hard
• Getting them to do something in the real world – even
harder!
• Capture and cultivate supporters online through content
and tools that make it easy for people to get more
involved
• The key to effective digital advocacy is moving a
community from PASSIVE to ACTIVE support
6. APPLAUSE/SHARE
• Likes and favourites from
your friends/followers
• Retweets from anyone –
media, politicians
• Shares on Facebook
• Sharing YouTube links
• All drives back to an owned
channel, such as a website
CO-PRODUCE
• Retweeting with comment
• Commenting on your
content
• Sharing content/article with
added call-to-action
• E-advocacy – i.e. letters,
tweets, posts, petitions
• Tagging people in their
network
ACTION
• Attending or organizing
gatherings, meet-ups, etc.
• Submitting petitions to
elected officials
• Meetings with government
officials
• Spokesperson for media
interviews
• Attending or organizing
lobby/action days
ACTION GENERATION!
PRODUCE
• Creating own content –
song, video, blog post
• Collecting signatures on
your group’s petition
• Starting a supportive
Facebook group
• Letters to government
officials, decision-makers
7. DEVELOPING KEY MESSAGES FOR EFFECTIVE ADVOCACY
• Key messages serve as the foundation for all effective
advocacy efforts
• The process of developing key messages help to distill
your topic to the words that will advance your issue with
government
• Your messages will help you to communicate with
decision-makers, through traditional, digital, and social
media
• A free guide called “Developing Key Messages for Effective
Healthcare Advocacy” is available here
(or copy this link into your browser: www.cohnwolfe.ca/keymessages)