Bringing new voices to the rare disease community

Author: PatientWorthy

Published On: 11/12/2023

Neurofibromatosis affects 1 in every 2,500 births, making it one of the most common genetic disorders in existence. While we are all working together in the fight for better treatments and a cure for NF, we are not alone in the rare disease and disorder world. 

Neurofibromatosis (NF) falls under an arm called RASopathies . RASopathies are a group of genetic conditions caused by problems in the RAS pathway, which is one way cells in the body communicate. The individual RASopathies are rare, but as a group: they're among the most common genetic conditions.

PatientWorthy is helping bring a voice to the rare disease community with their rare disease podcast, “Wait How Do You Spell That?” There, the podcasters talk about issues affecting people, rare and underdiagnosed conditions, and interview advocates from across the country. Listen to the latest in rare disease news at https://waithowdoyouspellthatraredisease.podbean.com/.