rare disease

Video Vignettes: Through Their Own Lens: Living with Sarcoidosis

Video Vignettes: Through Their Own Lens: Living with Sarcoidosis “Imagine being in a crowd and wishing you were invisible, but you’re marked, and there is nowhere you can hide.” Shanene Higgins wrote that in her essay “Marked: My scars remind me of my purpose,” part of Inspire’s 2017 Experts by Experience eBook. [...]

Tackling the Challenges of Rare Diseases: Introducing RareXcel

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

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 [...]