LISTEN TO OUR PODCAST

THE LATEST FROM PATIENT WORTHY

FEATURED

DIVERSE VOICES

UPCOMING EVENTS

SIGN UP FOR OUR NEWSLETTER

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

An 11-year-old girl in Texas is the first-ever person to be treated for an exceptionally rare genetic condition called NARS-1 disorder.

Read more with the link below:

bit.ly/43xpsUt
... See MoreSee Less

An 11-year-old girl in Texas is the first-ever person to be treated for an exceptionally rare genetic condition called NARS-1 disorder.

Read more with the link below:

https://bit.ly/43xpsUt

May 17th is World NF Awareness Day! A reminder of the real impact neurofibromatosis has on thousands of lives. Awareness leads to understanding, and understanding drives progress. #worldNFawarenessday #EndNF #raredisease #shareyourstory

If you're interested in sharing your story, click here: bit.ly/3VuxFDV
... See MoreSee Less

May 17th is World NF Awareness Day! A reminder of the real impact neurofibromatosis has on thousands of lives. Awareness leads to understanding, and understanding drives progress. #WorldNFAwarenessDay #EndNF #RareDisease #ShareYourStory 

If youre interested in sharing your story, click here: https://bit.ly/3VuxFDV