EE lance la campagne "ExtraordinRARE" pour la semaine des maladies rares

Rare Disease Week, an annual, worldwide campaign to raise critical awareness for rare diseases, launches today in celebration of Rare Disease Day on February 28. It is a time for the community to come together in a collective display of support for raising critical awareness and improving the lives of all individuals and families impacted by rare diseases, including cystic fibrosis (CF) and rare mutations of CF. 

As an organization laser-focused on the final 10% of the CF community with rare and nonsense mutations, we hold our membership in the rare disease community particularly close to our hearts. That’s why, at Emily’s Entourage (EE), we are proud to participate in and support Rare Disease Week with the launch of our “ExtraordinRARE” campaign!

Qu'est-ce qu'une maladie rare ?

Any disease that affects fewer than 200,000 people in the United States is considered rare. Affecting 40,000 Americans and 105,000 people worldwide, CF is a rare disease. Although individually these diseases are “rare,” collectively they are far from it. There are almost 7,000 rare diseases, affecting between 25 and 30 million — or roughly one in ten — Americans. The ironic reality is that rare diseases are actually quite common.

Despite the prevalence of rare diseases, there are no FDA-approved treatments for approximately 90% of rare diseases, according to the National Organization for Rare Disorders (NORD). CF is a rare disease in its own right, and those in the final 10% of the CF community that do not benefit from currently available mutation-targeted therapies are especially rare. 

“The rare disease community is a vastly underserved population and that is particularly true for the final 10% of the CF community that has been left behind by lifesaving medical advances,” says co-founder Emily Kramer-Golinkoff. “At Emily’s Entourage, we believe that no disease or mutation is too rare to matter. Our hope is that Rare Disease Week – and our tireless work to advocate for the CF community – garners attention and accelerates critical research and drug development for the final 10% of the CF community and all people with rare diseases, so nobody is left behind.”

Introducing “ExtraordinRARE”

To recognize Rare Disease Week 2023, today EE launches a week-long digital campaign, “ExtraordinRARE,” to highlight those living with rare mutations of CF and the broader rare disease community, raise awareness of the challenges they face, and celebrate the extraordinary rare and special qualities that unite us,

Often, rare can be interpreted as marginalized, forgotten, or too insignificant to matter. In fact, it can be our crown jewel, the very thing that makes us unique, interesting, and capable. ‘ExtraordinRARE’ empowers the rare disease community to embrace and celebrate their rareness. ‘ExtraordinRARE’ flips the script to show that being rare doesn’t have to be a weakness.

Throughout Rare Disease Week, EE’s “ExtraordinRARE” campaign will feature powerful stories from the CF community and facts about rare disease, and encourage everyone, and especially those impacted by rare disease, to embrace their rare – and extraordinary – qualities. 

Be Part of “ExtraordinRARE”!

Join us in celebrating all of our “ExtraordinRARE” qualities, and help us recognize and raise awareness for the exceptional rare disease community. Head to our Facebook or Instagram to join the conversation!

Share what makes you “ExtraordinRARE”

Merci à nos sponsors de la Semaine des maladies rares