The Playbook On


Not only placing those living with the disease and caregivers at the center of the organization, but putting them in the driver seat.


What we did

I AM ALS is an organization built with and for those living with ALS and caregivers. This approach to rare disease community building and advocacy places voices, needs and input of those impacted by ALS at the forefront of all actions and decisions. This patient-driven model succeeds because it gives those who are most invested in the effort for treatments and cures a platform to say what they need and how they want it communicated.

This approach also sets us up to be nimble and to redirect to emerging issues faced by the ALS community. Most importantly, it allows the organization to feel the same day-by-day, hour-by-hour urgency that those living with ALS and their loved ones feel, compelling us to move swiftly and with intention. This ground-up approach to community building ensures that everyone who wants to be involved has a seat at the table, and that the effort is built in collaboration with those living with ALS, rather on their behalf.

Don't do this

  1. Be slow to share critical information
    Scientific or political news in the rare disease space can take many months or years to appear. When it becomes available, share it quickly. Be a source for important information on your disease.
  2. Limit opportunities to have the voices of people living with the disease heard
    Those living with the disease should be offered ample opportunities to share their stories through internal channels and external events and communications. Their voices should be the largest megaphones your organization has.
  3. Hide the realities of your disease
    One of your primary communications objectives should be to celebrate, support and amplify the voices and experiences of those living with the disease -- honestly and candidly.
  4. Discourage out-of-the-box thinking
    Let your team, those living with the disease and volunteers know that their ideas and initiatives will be fully explored and supported, even if they’re unconventional or unorthodox.
  5. Create artificial barriers to participation in your organization’s work
    If someone offers assistance, don’t turn it away before fully considering it just because it didn’t come through a formal channel. Embrace all offers of support.

Best practices

  1. Involve representatives of those living with the disease throughout the organization
    In addition to teams, have those living with the disease participate on the board and in all important decision-making bodies. Never see those living with the disease as a “token” or “symbolic” gesture.
  2. Embrace connections with organizations for related diseases
    Uniting with similar disease organizations can help when advocating for shared objectives, such as research funding, regulatory issues or unmet care needs.
  3. Encourage those living with the disease to share their personal stories early and often
    Sharing stories from those living with the disease is one of the most vital parts of patient-centric organizing. They are the true experts -- help them reach others with their experiences and passion by connecting them with media, building social profiles and recording videos.
  4. Across all media platforms, keep a relentless emphasis on the positive
    Leading with personal and positive messages can help reshape the narrative around the disease from helplessness to hopefulness.
  5. Allow those living with the disease to make their own decisions and reach their own conclusions
    Every person's experience with a disease is different. There’s no set playbook. While the resources you provide can help, they’re not the only way to do things -- listen, learn and adapt.

Your turn

Below are worksheets to get you started in shaping your organizing approach. They can be downloaded or saved in your queue by clicking the flag in the top left corner of each worksheet tile and emailed to yourself in the top right corner of your screen to begin work immediately as you shape your future movement. To access worksheets across all categories of this Playbook click "see all worksheets." Nervous? Don't be. You got this.

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Who are you?

Share this worksheet with those living with the disease, loved ones or caregivers to help them find their voices and perspectives.

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Your stories

In this worksheet you'll write a longer version of your story to use during interviews, letters and videos; a medium version for social media posts and a 280-character tweet.

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Saved Worksheets

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Thank You

Thank you! We hope these worksheets help you build a sustaining and powerful movement.

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