Bringing new voices to the rare disease community
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.
Opportunity to Participate in an Independent Research Study to Tell Your NF1-PN Story
Bryter, an independent research company, is conducting a research study to understand about the lives of those (caregivers / patients) living with NF1-PN. The research is being sponsored by a pharmaceutical company and is designed to give the NF1-PN community the opportunity to tell their story about the lived experience.
Celebrating Our 2023 #NFStrong Events
As we wrap another incredible season of #NFStrong events, we'd like to extend our heartfelt gratitutde for everyone who joined and supported in whatever way they could. Join us as we reflect on what a year it's been and look ahead to 2024!
Autumn's story of her NF journey recounted by her mother, Melissa.