The Playbook On


Bringing entities together to broaden and accelerate impact.


What we did

I AM ALS’ top success in the area of collaboration has been in its unifying of the ALS community around specific goals. In particular, we brought together many organizations and developed joint requests, statements and petitions that have resulted in unprecedented change. This has developed a culture of collaboration that has impact beyond our specific efforts. It doesn’t mean we all do the same thing in the same way, but allows us to imagine what more is possible if we are moving in the same direction, using each of our organization’s unique expertise and capabilities.

In particular, I AM ALS has worked with other organizations to spread awareness for all neurodegenerative diseases, to map the impact of ALS in every congressional district, to advocate for important federal legislation and to grow wide-reaching social media campaigns. 

Don't do this

  1. Fixate on who gets credit in a partnership
    Rather than fighting over small things such as logo placement or media coverage, focus on the outcome everyone is working toward together.
  2. Wait to build relationships with other organizations with a shared mission
    Collaborating early on and showing you want to learn from other organizations can help build credibility in your disease community.
  3. Leave a relationship untended once it’s created
    Once you’ve made initial contact with another group or person, make sure your partnerships aren’t in name only. Work on new ways to collaborate or communicate with your new partners.
  4. Fight over ownership of community resources
    If your organization develops a tool or resource that may be beneficial to the larger community impacted by the disease, spread the news and make it easily accessible, as much as possible.
  5. Be afraid to speak up or get involved
    Don’t feel intimidated by more established players in the space. Collaborating with other organizations can add benefit to all involved -- and, most of all, those living with the disease and caregivers.
  6. Lose sight of the most important metrics
    While competition for media coverage, social followers and other metrics may be validating, measure your impact and your efforts on delivering for those living with the disease.

Best practices

  1. Pursue partnerships that expand the focus on wellbeing for those living with the disease
    Collaboration between organizations can provide improved support for those impacted by the disease and even outcomes. Join forces!
  2. Establish professional relationships with other nonprofits early
    A helpful way to build collaboration is to have a “point person” relationship with at least one member of each partner organization.
  3. Establish regular check-ins with others
    Recurring partner or working group meetings feed collaboration. Repeat check-ins allow organizations to stay coordinated on existing efforts, and through ongoing sharing of goals and plans -- could help identify new areas of work together.
  4. Be open-source with what you build
    Sharing is caring. Creating helpful resources that can be shared and used by those living with the disease and other organizations across the disease community creates credibility, goodwill and progress.
  5. Push other organizations, when necessary
    If you spot room for improvement or optimization with another group, you shouldn’t hesitate to make your voice heard so long as your goal is to help those living with ALS.
  6. Celebrate other organizations, loudly and proudly, at every turn
    Be a good friend and cheerleader. Routinely celebrate the successes of other organizations in the rare disease community -- either via personal contact or social media.

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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