Rare Disease Planning project

We're building a digital resource hub for a specific rare disease community and need a patient advocate with lived experience (patient, caregiver, or community organizer) to help populate and shape the content. You know where patients actually get stuck — and where the good resources are hiding. We'll handle the platform and structure; you bring the real-world knowledge. What you'll do You'll build out the core modules of the hub, working from a simple template we provide. Each module is a focused section, and they might include these or others: Condition Basics — A plain-language overview of the disease: what it is, how it's diagnosed, common terminology patients need to know. Finding the Right Care — Specialists, centers of excellence, and how to get a referral or second opinion. Treatment & Trials — Current treatment options and where to find relevant clinical trials. Financial & Insurance Navigation — Assistance programs, coverage appeals, copay support, and common cost pitfalls. Community & Support — The legit advocacy orgs, support groups, and online communities worth joining (and which to skip). Day-to-Day Living — Practical tips: managing flares, working with employers/schools, mental health, caregiver resources. For each module you'll curate 5–10 vetted links/resources with a one-line note on why each matters, plus a short intro paragraph in patient-friendly language. Requirements Lived or close experience with a rare disease community Strong sense of which resources are trustworthy vs. noise Clear, warm writing in plain English To apply: Tell us which rare disease community you're connected to and one resource you think every newly diagnosed patient should know about, and a bit about your relationship to this community. 