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 for the community to come together to raise awareness of issues that impact the rare disease community and celebrate what it means to live with a rare disease, including cystic fibrosis (CF).
What is a Rare Disease?
In the United States, a rare disease is any disease that affects fewer than 200,000 people. There are 7,000 diseases that are considered rare, affecting about one in 10 Americans. While each of these diseases is “rare” individually, the reality is that collectively, rare disease is actually quite common. In fact, there are over 300 million people worldwide living with a rare disease. That’s 5% of the global population! Despite the prevalence of rare disease, 90% of rare diseases do not have an FDA-approved treatment.
The Rarest of the Rare
Affecting 30,000 people in the United States and 70,000 people worldwide, CF is considered a rare disease. There have been lifesaving treatments developed in the last few years for 90% of the CF community, but those with rare nonsense mutations of CF fall in the outlying 10% of the CF population that do not benefit from any of these advances. They are among the rarest of the rare, still waiting with bated and fading breath for their lifesaver.
Therein lies the sole focus of Emily’s Entourage: to accelerate lifesaving research and drug development for those in the final 10% of the CF population, with a focus on CF nonsense mutations.
“At EE, we believe that no disease or mutation is too rare to matter,” says EE founder Emily Kramer-Golinkoff. “Our hope is that Rare Disease Week elevates attention and accelerates research and drug development for all rare diseases, including CF, so nobody is left behind.”
Given our focus on a rare group of mutations within a rare disease, we hold our membership in the rare disease community close to our hearts. Banding together with the broader rare disease community is a reminder that we are not in this quest alone, and that rare is not so rare after all.
Rare Disease Week 2022: “Dare to be Rare”
To mark Rare Disease Week 2022, EE will celebrate what it means to live with a rare disease like CF through a week-long digital campaign called “Dare to be Rare.”
In the rare disease community, “rare” is often thought of as marginalized, forgotten, or too uncommon to matter. The “Dare to be Rare” campaign flips the script to show that being rare isn’t a bad thing. In fact, it can be the thing that makes us unique, dynamic, interesting, and powerful.
Throughout Rare Disease Week, EE will share information and insights on social media that celebrate this quality of rareness, including a special message from one of EE’s most prominent supporters. We will highlight the universality of “rare” qualities even outside of the rare disease community, revealing that what’s “rare” may actually be more common than most people realize.
Dare to be Rare with Us
We invite you to join us in wearing your rare like the badge of honor it truly is. Head to our Facebook or Instagram to see Emily showing off her stripes and to add yours to the conversation!
Thank You to Our Rare Disease Week Sponsors