Blog

Ever wonder what it actually feels like to have a serious chronic illness like Cystic Fibrosis? Christine Miserandino’s “Spoon Theory” is kind of legendary in the chronic illness world for... Read More

Can you hear that? That’s the sound of silos shattering… obstacles crumbling… the limits of what’s possible smashed to pieces — and it’s still reverberating from the evening of December... Read More

Catch the livestream on Friday, September 23rd at 4pm EST through Rare University’s platform. Today, there is nowhere that Emily would rather be than among other esteemed rare disease stakeholders at... Read More

From time to time we invite guest bloggers who are part of the EE community to contribute their unique voices to our blog. Today’s guest blogger is EE superstar Brandon Faske,... Read More

From time to time we invite guest bloggers who are part of the EE community to contribute their unique voices to our blog. Today’s guest is Mallory Smith, a 23-year-old writer living... Read More

We’re so honored that Australian health empowerment coach and blogger Jessica Bean chose to feature Emily on her “CF Superhero” blog series! We are reposting Jessica’s interview with Emily to give our Entourage a window into... Read More

Today’s guest blog post was written by Emily and adapted from a speech delivered at the Global Genes and Penn Orphan Disease Center’s Rare Patient Advocacy Symposium. Like so many... Read More

Bronwyn Breitner, the big and bold thinker of EE This blog post is part of our sEEcret sauce blog series highlighting some of our most integral Emily’s Entourage team members.... Read More