Blog

Rare Disease Week, which launches today ahead of Rare Disease Day on February 28, is a worldwide campaign to bring about critical awareness for rare diseases. It is a time... Read More

By Jessica Rutstein Lazarus, Emily’s Entourage board member and Emily’s lifelong best friend If you know Emily, then you know that her superpowers are many. She’s smart, thoughtful, compassionate, forward-thinking,... Read More

Everything (and we mean everything) about the 10th annual Evening with Emily’s Entourage gala, held on Saturday, Dec. 4, 2021, was remarkable. First and foremost, in celebration of our momentous... Read More

Our Emily’s Entourage (EE) Champions program celebrates philanthropic leaders who are helping EE speed lifesaving breakthroughs and a cure for people with nonsense mutations of cystic fibrosis (CF). This year,... Read More

By Jennie, mother of a child with cystic fibrosis As we head into Thanksgiving, I’m looking forward to some much-needed decompression and quality time with my family. But, as the... Read More

By Nicholas Dinges, board member, Emily’s Entourage I’ve known Emily for 25 years now (we went to middle school, high school, and even college together!). But it wasn’t until 7... Read More

By Erin Moore, mother of a child with cystic fibrosis “They told you he has CF, right?,” the doctor said while he finished dressing in his PPE upon entering our... Read More