Rare Disease Girl

Bad News

Licking my wounds

Nov 15

6

Join us for our open enrollment...

A look inside how we are tackling 2026 for our family.

Nov 12

Old Wounds Part 2 - Confronting a doctor I've been thinking about for 3 years.

A surprising opportunity for healing I thought I'd never get.

Nov 9

1

13

1

Old Wounds Part 1 - Confronting a doctor I've been thinking about for 3 years.

A surprising opportunity for healing I thought I'd never get.

Nov 5

2

3

1

October 2025

Boo! cute photos, a miracle, and a spooky story

Happy Halloween!

Oct 31

1

4

Your stories matter to me.

aHUS Conference Reflections and Healthcare Survey

Oct 26

2

2

You’re not brave, if you’re not scared.

I walk backwards off a 14 story building for cancer.

Oct 8

5

4

September 2025

Live Like It Matters

Two toddler-moms with illness discuss life and what's important

Sep 28

1

The aHUS Patient Resource Guide

Made By Patients For Patients

Sep 21

1

How I Save Money On Medical Bills

Life is more expensive for everyone, and getting worse - here's what I do.

Sep 18

1

2

September Reset

Back to school, back to goals

Sep 7

August 2025

this is your sign to make all your doctor appointments for the rest of the year

and a basic explainer of the wild CDC shake-up.

Aug 29