The Playbook On


Ensuring the organization is sustainable.


What we did

As a start-up organization with ambitious goals, every moment and every dollar spent must make a maximum impact. We maintain a small staff and work directly with a large committee structure through which the patient and caregiver communities provide input, insight and directly deliver solutions and initiatives that they identify as needed.

Our board is a diverse mix of experts who are willing to be actively involved in the work of the organization. To maximize our knowledge and abilities, we partner with outside consulting firms to build connections with lawmakers, videographers and other creative agencies to deliver patient testimonials and awareness efforts broadly and biopharmaceutical companies to provide input on clinical trial development and execution.

Don't do this

  1. Commit to a large staff too quickly
    You might feel pressure to grow quickly in order to be taken seriously. Don’t fall for it. Doing this can limit the input of those living with the disease and lock you into an agenda before you understand where you can have the most success.
  2. Stifle employee or volunteer creativity within organizational barriers
    Avoid creating silos or narrow directions that stifle innovation and collaboration at your organization. Instead, provide broad yet clear guidance and allow people to take ownership of their ideas.
  3. Be afraid to consider candidates with a diversity of experience
    Think outside the box. Strike a balance between employees with experience in disease advocacy and those who bring new talents and perspectives from other fields.
  4. Get too rigid or hierarchical about staff roles
    Especially if you're a startup, hire people who will take initiative, are passionate about making a difference against the disease and bring skills beyond their assigned roles. With everyone pitching in and adding where they have the most interest, you will be more productive and promote a collaborative culture.
  5. Lose focus of the perspective of those living with the disease as your organization grows
    As your organization grows, create teams focused specifically on fostering a deeper relationship with those living with the disease so you never lose sight of their needs and ideas.

Best practices

  1. Elevate staff and volunteers’ “superpowers”
    Make the best use of everyone’s unique skill sets and backgrounds by allowing them to use their “superpowers” to do the most good.
  2. Be extremely methodical in hiring
    Early on, it’s important to hire slowly and with intention. Above all else, seek out employees who are willing to go above and beyond to help those impacted by the disease.
  3. Provide consistent guidance, but allow a high degree of autonomy
    Staff, volunteers and community members succeed when they feel that they have autonomy to generate new ideas. Give them the opportunity to experiment and innovate.
  4. Put together a diverse group of board members fully committed to the cause
    Having a “working board” can greatly expand your capabilities. Build a board with experts in key areas of your work to extend the networks and resources you can bring to the cause.
  5. Ensure the organization extends beyond one person’s story and mission
    A founder’s inspiration and impact is an essential starting point, but success will come if your organization can represent a broader community of people impacted by the disease.
  6. Collect as much data as possible about your work
    Collect a strategic set of KPIs (key performance indicators). This data will help you establish benchmarks and measure the efficacy of your processes and your progress over time.

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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