A Tapestry of Strength: Fostering Collaboration in Patient Advocacy

Patient advocacy groups mostly compete for the same limited attention and funding. They'd do more for patients by sharing infrastructure than by competing for it.

Patient advocacy groups spend a lot of energy competing for the same limited attention, funding, and media cycles. That competition serves the organizations more than it serves the patients they're supposed to represent.

Rare disease groups and major illness organizations aren't actually rivals. A rare disease advocate brings depth a broad organization can't match, and a large organization brings reach a small one can't buy. That's not redundancy. It's complementary infrastructure that almost nobody is using as infrastructure.

The obvious version of this: established organizations that already know how to navigate the legal and logistical maze mentor the newer, smaller ones instead of treating them as competitors for the same grant. A shared research repository instead of five groups independently re-discovering the same findings. Joint campaigns instead of five separate ones splitting the same audience's attention.

None of this erases any single group's story or mission. It means the stories reach further because the infrastructure behind them stops being duplicated five times over. Patient advocacy has enough real opposition already. It doesn't need to compete with itself too.