I have been in rooms with rare disease advocacy leaders for two decades. What I see most often is deep dedication colliding with too many priorities. The leaders who built these organizations carry the weight of a community on their shoulders, and they are trying to do all of it, all the time. The organization is paying for it.
The to-do list is endless. The stakeholders are endless. The needs are endless. The organization moves in every direction at once, which is the same as not moving at all.
What strategic discipline buys an advocacy organization is fewer priorities, held with more conviction, across an organization where everyone knows what they are.
Structured strategy answers four questions
Urgency and trust and community knowledge — the things advocacy organizations hold that no one else can replicate — become more powerful when they are pointed at the right targets, in the right order, with the right roles.
A structured strategy answers four questions.
What are the few outcomes that matter most over the next two to three years?
What work are we going to do to get there?
Who owns what, and who decides what?
How will we know we are making progress?
These sound simple. In practice, they are the questions advocacy organizations most often avoid, because answering them requires choosing one thing over another. The cost of avoiding them is that everything stays important and nothing gets done at scale.
What changes when the answers are clear
The board stops second-guessing. The staff stops asking which fire to fight first. The community stops getting mixed signals about what the organization stands for. Industry partners stop receiving incoherent proposals from different parts of the organization.
The same people, the same passion, the same knowledge produce different results, because the same effort is no longer being distributed across too many things to land any of them.
A clear strategy gives the organization the ability to say no with conviction. The organizations that learn to say no with confidence are the ones that get further on what they say yes to.
The cost of staying overwhelmed
Staff burnout, because every priority is a fire. Inconsistent industry partnerships, because every conversation starts from scratch. Fundraising fatigue, because the case shifts depending on who is making it. Community frustration, because families see effort but cannot connect it to a coherent direction.
The most painful cost is missed inflection points. Rare disease moves fast. When a regulatory window opens or a major partner becomes available, the organizations that are ready to act are the ones that already knew what they were trying to do.
What it looks like to start
The hardest part is making the choices. The documents are easy. Once leadership has agreed on the few priorities that matter, the rest is operating cadence: the board, the staff, the community, and the partners all seeing and understanding the same direction.
The advocacy organizations I admire most have made deliberate choices about what they will and will not do. Their staff is calmer. Their partners are clearer. Their communities are better served.
Fewer priorities. Held with conviction. Across an organization that knows what they are.
Kristin Marvin Keller is the Principal of Compleo Advisors, a rare disease strategy and creative firm.