The Playbook On

Outreach / Awareness

Identifying people who care and how to get more people to take action.

Outreach / Awareness

What we did

Media attention can be incredibly helpful if you’re hoping to increase public awareness of a rare disease organization. A thoughtful media strategy puts a face to the disease, educates the public and recruits new supporters who care about and relate to the mission. Even without access to major publications or news shows, it’s possible to go viral by sharing a clear, relatable and personal story on social media. 

I AM ALS Co-Founder Brian Wallach found an audience through his personal Twitter account. He shares short, purposeful stories about life with ALS and the account has been shared by major influencers across a spectrum in sports, politics, acting and music. As an organization, I AM ALS has found success in raising awareness via our dogged approach to all platforms, never shying away from bold or otherwise eye-catching messages, including during a Times Square billboard takeover and in an interview on the TODAY Show.

Don't do this

  1. Muddle the message
    Don’t bog yourself down with technical terms. Reach a bigger audience, using straightforward, friendly and easy-to-understand language.
  2. Shy away from creative storytelling
    Creating short videos with facts, statistics and a clear call to action can have a huge impact. This is an effective first step to raise awareness.
  3. Focus on anger - there’s already plenty to go around
    Sharing too much negative messaging and media can turn away potential partners who may view it as defeatist. Be a source of light and hope.
  4. Be a pessimist
    Staying positive of your organization’s work and potential breakthroughs can provide a refreshing difference for important audiences. Realistic positivity creates hope and strength.
  5. Lose sight of your mission
    Your mission is your distinguishing factor -- that special thing that makes your organization worth supporting. Keep your mission front of mind to ward off distractions.
  6. Let perfect be the enemy of good
    Not every campaign needs a high-budget, splashy rollout. It’s better to be authentic, timely and passionate than miss an opportunity by sweating the details.

Best practices

  1. Develop a clear description of the disease
    An important first step in messaging is developing educational content that is both easily digestible and emotionally resonant with new audiences.
  2. Provide a clear description of your organization’s work
    It’s important that you describe in easy-to-understand language what purpose your organization serves (and which it doesn’t), where you’ve already made an impact and how new audiences can get involved.
  3. Lead with positivity and urgency
    Sharing personal and optimistic messages can help reshape the narrative around the disease from helplessness to hope and action.
  4. Use personal storytelling to get people invested
    People who don’t have personal experience with your disease are more likely to get involved when they understand the personal struggles of others and how to take easy action in their moment of engagement.
  5. Draw connections between disease communities
    Showing how diseases relate to one another can help demonstrate the collective impact of patient organizations while creating a sense of urgency and scale. If there is a connection, show it so it can draw more people in and assist in awareness and reach.
  6. Explore every media opportunity
    Accept (or at least consider) every interview, sponsorship or ad campaign available to you, even if you think you aren’t ready or don’t have a larger strategy in place.

Your turn

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