Editor’s Choice: The Government Shutdown’s Affect on Rare Disease Research and a Moyamoya Story

Hope everyone is having a wonderful Wednesday!

The weather where we are is freezing this week– but that’s a perfect excuse to sit down with a few of our top articles this week. Today, we’re highlighting a two part story of hope from a mom, advocate, and patient with Moyamoya disease. We’re also sharing an article on how the US government shutdown impacts rare disease research, as well as a story on how the Australian government is working to support the rare community. Finally, we have an article covering the charity mentioned on this week’s episode of the Bachelor.

Sit back and enjoy this week’s Editor’s Choice.


Effect of Government Shutdown on Rare Disease Research

How does the government shutdown impact research funding– and how might it affect it in the future?


Lisa Deck’s Journey Part 1

When Lisa was diagnosed with Moyamoya disease, her whole world changed. She shared her journey with us in two parts.


Australian Government Initiates New Trial Program to Support Individuals Recently Diagnosed with a Rare Disease

Life after a rare diagnosis is a mix of emotions and new challenges. Here’s how the Australian government is trying to help.


Sarah’s Closet: The Charity Honoring Bachelor Contestant Elyse’s Sister

Sarah’s Closet was recently mentioned on the Bachelor– here’s the story of how the charity came to be and what it does.

Do you have a rare disease experience of your own? Share with us here.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email

What are your thoughts on being a rare disease advocate? Share your stories, thoughts, and hopes with the Patient Worthy community!

Close Menu