Patient Advocacy Group in a Box
Define the roles a rare disease patient advocacy group needs, estimate the effort behind each program, and build a kit for every role you hold or cannot fund yet. Where a role is unfilled, the kit shows how an AI tool can take the first draft while a named person stays accountable. An operating library of task cards, templates, trackers, and guides sits behind every kit.
Start here
Every role in this catalog is best held by a person. Where a group cannot fund one yet, the kit shows what an AI assistant can take on, what still needs a named person, and when the approximation stops being enough.
How to use this tool
- Describe your group. Everything downstream reads from that page, including the effort scale and the prompts.
- Go through the role catalog and write in who holds each role, if anyone, and the hours they have. Roles are written as functions rather than job titles, because in a new group one person holds several.
- Choose the programs you run or want to run. The program builder maps them to the roles they need, adds up the effort, and reports the gaps against the people you named.
- Open the kit for each role. If someone holds it, the kit gives them checklists, worksheets, and prompts that take the first draft. If nobody holds it, the kit names the accountable person, states what an AI assistant can do and what stays with a person, lists the minimum recurring tasks so nothing is dropped silently, and says when to fund the role. Each kit ends with the task cards, templates, trackers, and guides from the operating library that belong to that role.
- Browse the operating library on its own when you want the full set: task cards by operating area, document templates, tracker layouts, operating guides, a directory of software offers and support programs for nonprofits, and integration specs. Tick task cards to build a work plan.
- Download the plan, the work plan, the prompt pack, the templates, and role descriptions you can post. Save a file so you can reload your work later; nothing you type leaves this page.
How the estimates were made
The hours per week on each role card are working estimates dated September 2026, written from experience advising rare disease groups on their programs and research funding. They are starting points, not findings. Edit any of them on the role card; your edits are kept in the save file and marked in the plan. To replace them with your own numbers, log hours by role for a quarter and enter the averages.
Supporting a role or approximating it
Where this tool says AI assistant, it means a general AI writing tool you run yourself, such as ChatGPT, Claude, or Gemini. It is not a person and not a service this tool provides. It produces drafts; a person always reviews and decides.
Support this role appears when someone holds the role. The kit gives them checklists, worksheets, and AI prompts that take the first draft; the decisions stay with them.
Approximate this role appears when nobody holds it. An AI assistant can draft, summarize, organize, and keep a calendar. It cannot sign, decide, supervise, hold relationships, or give clinical judgment, so every approximated role still has a named accountable person, usually a board member, who reviews what the AI produces. Board officers and clinical reviewers cannot be approximated at all; their kits prepare the work while you recruit.
The operating library
The library behind the Library stage and the role kits was assembled in October 2026 for a US nonprofit that may run research programs. Every task card is sized in hours with steps, a deliverable, and a test for when it is done; every template names its reviewer; every entry in the software offers directory records the date its official page was checked. All of it is material to adapt, not a standard, and none of it is legal, tax, or medical advice.
Scope
The catalog is written for rare disease advocacy groups in the United States. Filing, registration, and tax content follows US rules; groups elsewhere can use the roles and kits as written and substitute their own regulators. The example group throughout is a placeholder, Your Epilepsy Foundation, not a real organization.
Your group
The prompts, role descriptions, and effort scale are built from what you enter here.
The role catalog
Write in who holds each role and the hours they have. Leave the holder blank if nobody does, and the kit will treat it as a role to approximate. Open a card for the responsibilities, skills, and the trigger that makes the role necessary.
Program builder
Choose what the group runs or wants to run. Each program needs some roles and is helped by others; the report below adds up the effort and shows where the people are missing.
Programs
Add a program of your own
Effort and gap report
Role kits
Pick a role, and the kit changes with whether someone holds it: support for the person who does, or an approximation with a named owner for a role nobody holds yet.
Operating library
Task cards, templates, trackers, guides, software offers and support programs, and integration specs, organized by operating area. Assembled in October 2026; treat everything here as material to adapt.
Outputs
Everything below is built from what you entered. Downloads are plain text files you can edit, share, or paste into a board packet.
Work plan
Task cards you ticked in the role kits or the Library, with a due date for each. The work plan download includes the steps, the test for done, and the AI prompt for every task.
Resources and further reading
Links were checked in October 2026, and each opens in a new tab.
Patient Advocacy Group in a Box, from Boyce Data Science. Effort bands are working estimates dated September 2026 and are editable on each role card; the operating library was assembled in October 2026. This tool is educational; it is not legal, tax, or medical advice. Nothing you enter is sent anywhere; use Save file to keep a copy.