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Community Blog

Stories, reflections, and updates from the Jansen's community.

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Family stories and milestones
Community moments and reflections
Events, advocacy, and support

Showing 1-10 of 23 posts

Blog post Oct 27, 2024

Key Takeaways for the FDA from the Rare Disease Innovation Hub Meeting

Blog post Sep 25, 2023

The Intersection of Identity, Culture, and Rare Disease: What it means to be "seen"?

Blog post Jan 02, 2022

Of Hope and Miracles

Blog post Jan 01, 2021

Rare Disease - The Waiting Game

Blog post Dec 03, 2020

Leadership and Disability

Blog post Jul 26, 2020

Reflections on 30 years of ADA

Blog post Dec 17, 2019

When Someone Questioned My Requests to Accommodate My Child's Disability

Blog post Nov 30, 2019

When Your Medically Complex Child Asks 'Why Me?'

Blog post Nov 29, 2019

I'm Not a Doctor, but That Doesn't Mean I'm Not an Expert on My Child's Condition

Blog post Oct 24, 2019

When Your Child With a Rare Disease Doesn’t Feel Brave