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Forgotten Rare
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A new diagnosis

You just got a diagnosis (or a strong suspicion of one).

You don't have to do all of this today. Breathe. Pick one. Come back tomorrow. The order below is what most families wish they'd done first - but there is no wrong way to walk this.

0 of 10 steps ยท Over the next few weeks
  1. 01

    Save the words

    Add the diagnosis to your Problem List with ICD-10 if you have it. Future you will thank present you.

    Open Diagnoses
  2. 02

    Translate the letter

    Paste the after-visit summary or report into the Medical Explainer for plain-English context.

    Open Explainer
  3. 03

    Write your child's story (draft)

    Even a rough version of the Medical Story will save you from re-explaining to every new doctor.

    Generate Story
  4. 04

    Name your team

    Add the diagnosing doctor and any specialists involved so far. You'll add more later.

    Add providers
  5. 05

    Start a symptom log

    Log what you've been seeing. Patterns are easier to spot in writing than in your head.

    Open Tracker
  6. 06

    Check insurance coverage

    Find out what's covered, what needs prior authorization, and who to call. The Coverage Center walks you through it.

    Open Coverage Center
  7. 07

    Tell one person

    Pick one trusted person and tell them out loud. The Family Update Generator can help if words are hard.

    Draft an update
  8. 08

    Find your community

    Other families have walked this. The Support Navigator helps you find disease-specific groups.

    Find groups
  9. 09

    Watch for clinical trials (optional)

    Add this diagnosis to your Trials Watchlist so you'll see what's available when you're ready to look.

    Open Watchlist
  10. 10

    Take a real breath

    Daily Check-in. One sentence. That's the whole assignment today.

    Check in
You are not behind. You are doing it. The fact that you opened this is enough for today.