Video Vignettes: Through Their Own Lens: Neurofibromatosis Our “Through Your Own Lens” initiative invited members to share their personal stories through short videos. Patients have been describing their disease history, their feelings about their disease and thoughts about Inspire. Living with Neurofibromatosis Neurofibromatosis is a condition affecting the nervous system, causing tumors [...]
Tackling the Challenges of Rare Diseases: Introducing RareXcel Neurofibromatosis is a rare, genetic condition causing tumors to form on nerve tissue all over the body. The masses can grow both internally and externally, often appearing as lumps under the skin surface. People can experience deformities of skeletal structures as well, making this [...]
Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases. Now, on social media, they are writing about it, sharing the desperation and the hurt. And they are finding each other in [...]
