2024

World Orphan Drug Congress

We were invited as main speakers in Boston! We were thrilled to present on Code Rare and our talk was titled: Importance of Understanding the Significance of Data, Education, Next Step Care, Continuous Improvement in Clinical Care.

Newsworthy

Syringomyelia on FOX NEWS - YouTube

What is syringomyelia? - YouTube

Mail Online Videos: Top News & Viral Videos, Clips & Footage | Daily Mail Online

I Thought I Was Pregnant but I Actually Had a Debilitating Disease (cosmopolitan.com)

I'm a Nurse With Syringomyelia Determined to Make a Difference (themighty.com)

2016_atlanta_ga_house_press_release_final.pdf

Elizabeth's Battle Leads to New Hope in Organization for Rare Disease - YouTube

Lawrenceville woman with rare disease makes strides with charity | Lawrenceville | gwinnettdailypost.com

Beth Nguyen, R.N. - 2017 Rare Impact Award Honoree - National Organization for Rare Disorders (rarediseases.org)

NORD's 2017 Rare Impact Awards - YouTube

Amazon.com: BEYOND SYRINGOMYELIA: A Registered Nurse with a Rare Disease Overcomes Hardship, Embraces Blessings, and Empowers Lives! eBook : Nguyen, Beth: Kindle Store

Gov. Kemp Announces Appointments to Rare Disease Advisory Council | Governor Brian P. Kemp Office of the Governor (georgia.gov)

NORD 021717 video.mp4 NORD2020 1 (1) (1).mp4

Grant Support Letter

Check out our Podcasts on Apple, Spotify, etc

For media inquiries, to be a guest on our podcast or to have a member of our speakers bureau to be available at your event contact us.