Inspire helps NF families learn, share about condition

Author: Sarah Wise
Published On: 08/31/2017

The Neurofibromatosis (NF) Network partners with Inspire to host an online support community with nearly 24,000 neurofibromatosis members. The site helps NF patients, families, friends, caregivers, and health professionals connect as they contribute to over 500 posts per week filled with information and encouragement.

Each week, more than 100 new people join for a variety of reasons. Here are just a few examples with excerpts from actual user posts.

  1. Meet others that understand neurofibromatosis and its challenges.

“I'm so in love with this site to share and support our daily struggles with wanting to be seen as a person and not someone that people stare at and wonder what’s wrong with us."

  1. Hear inspirational stories of others who have overcome NF complications.

 "I was so amazed when I was told of this site and how many incredible stories I've read and can relate to...”

  1. Ask questions and receive support.

“I have learned more from your stories then I have from my son’s doctor. Thank you so much. I hope to learn more and share my stories. My son was just diagnosed today so I am still in a state of shock.”

  1. Search for local people with NF and find information about nearby events.

“I personally don't know anyone with NF but would like to start attending events/support groups with people with this condition. I would greatly appreciate it if you can share with me how NF has affected your life and if you know of any support groups in the Seattle metro area.”

The NF Network's Inspire online support community has something for everyone. Read more and/or join today and connect with others affected by neurofibromatosis who understand what you're going through, because "Together We're Better."


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