Connecting with others who understand your journey can make all the difference. Our events are a chance to build relationships, learn from experts, and have some fun with a community that cares. We host a variety of gatherings throughout the year across Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin.
Walk4NF Your Way 2026
You can still be a part of the 2026 Walk4NF movement! With our NF Your Way program, you can create a challenge for yourself like walking 50 miles in a month and invite your friends to join in or start a local Walk4NF, or even hike, dance, or get a treadmill alone or with friends!
When
Any Time, Any Day until Sept 30
Where
Anywhere
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NF Parent Conversations
Connecting with others who understand your journey can make all the difference. Our Parent Community Conversations offer a welcoming online space for parents and caregivers affected by NF to share experiences, ask questions, and build…
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Productive Conversations with Healthcare Providers (English)
This program describes the components of productive conversations, such as preparation, organization, and framing of thoughtful questions. It examines ways to make conversations productive with physicians and other members of the care team. Presented by…
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Conversaciones constructivas con los profesionales (Español)/Productive Conversations with Healthcare Providers
Este programa describe los elementos que conforman una conversación productiva, como la preparación, la organización y la formulación de preguntas bien planteadas. Analiza cómo lograr que las conversaciones con los médicos y otros miembros del…
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NF1 Peer Conversations
Join other adults living with NF1 for NF1 Peer Conversations—an online, supportive space to connect, share experiences, and talk openly about life with NF1. Some conversations will focus on specific topics or feature an expert guest,…
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NF Parent Conversations
Connecting with others who understand your journey can make all the difference. Our Parent Community Conversations offer a welcoming online space for parents and caregivers affected by NF to share experiences, ask questions, and build…
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Common Medical Terms on the Patient Journey (English)
This program introduces key medical terms, tests, procedures, and clinical trial concepts related to rare disease care, while helping patients and caregivers prepare for healthcare visits and communicate with confidence. Presented by Joe Booe from Alexion.Joe Booe is a…
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Términos médicos habituales en el proceso asistencial del paciente (Español)/Common Medical Terms on the Patient Journey
Este programa presenta términos médicos clave, pruebas, procedimientos y conceptos relacionados con los ensayos clínicos en el ámbito de la atención a las enfermedades raras, al tiempo que ayuda a los pacientes y a sus…
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NF1 Peer Conversations
Join other adults living with NF1 for NF1 Peer Conversations—an online, supportive space to connect, share experiences, and talk openly about life with NF1. Some conversations will focus on specific topics or feature an expert guest,…
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NF Parent Conversations
Connecting with others who understand your journey can make all the difference. Our Parent Community Conversations offer a welcoming online space for parents and caregivers affected by NF to share experiences, ask questions, and build…
-
NF1 Peer Conversations
Join other adults living with NF1 for NF1 Peer Conversations—an online, supportive space to connect, share experiences, and talk openly about life with NF1. Some conversations will focus on specific topics or feature an expert guest,…
Get to Know Our Signature Events
Volunteer at an Event
Our events are powered by the passion and dedication of our amazing volunteers. Whether you can help with setup, registration, or cheering on participants, your time makes a huge impact. It’s a rewarding way to meet new people and support the NF community.