Rare Disease Week, which launches on February 22 in celebration of Rare Disease Day on February 28, is an annual celebration to raise awareness for rare diseases. It is a time for the community to come together in a collective display of support for raising awareness and improving the lives of all individuals and families impacted by rare disease, including Cystic Fibrosis (CF).
WHAT IS A RARE DISEASE?
In the United States, any disease affecting fewer than 200,000 people is considered rare. Affecting about 30,000 Americans and 70,000 people worldwide, CF is one of the better known rare diseases. Although individually the diseases are “rare,” collectively they are far from it. In fact, there are almost 7,000 rare diseases, affecting about one in ten Americans. The ironic reality is that rare disease is actually quite common. Despite the prevalence of rare disease, there are FDA-approved treatments for fewer than 10% of rare diseases according to the National Organization for Rare Disorders (NORD).
While CF is considered a rare disease in its own right, those with nonsense mutations of CF, which affect roughly 10% of the CF population, are especially rare. Given our focus on a rare group of mutations within a rare disease, we hold our membership in the rare disease community particularly close to our heart.
“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, so nobody is left behind.”
RARE IS EVERYWHERE
To mark Rare Disease Week 2021, EE will celebrate and demystify what it means to live with a rare disease like CF through a week-long digital campaign themed “Rare is Everywhere.” Beginning Monday, February 22 through Rare Disease Day on Sunday, February 28, EE will share facts, insights, and stories on social media about rare disease and CF, with a focus on rare mutations of CF, including nonsense mutations.
The “Rare is Everywhere” campaign will draw upon familiar uses of the word “rare”—like rare strength,rare vision,and rare opportunity—to affirm and celebrate the beauty and power of “rare.” Included is a tribute from Emily’s fellow Lower Merion High School (PA) alum and late NBA star Kobe Bryant, who recorded a message before his passing celebrating EE’s “rare mentality.”
RARE DISEASE WEEK CALENDAR
Monday, February 22
Rare disease:Facts and statistics about rare diseases.
Tuesday, February 23
Rare vision:A spotlight of CF pioneers whose vision and leadership are making a difference.
Wednesday, February 24
Rare mentality:A special look at the mentality and focus required to do the work of EE.
Thursday, February 25 and Friday, February 26
Rare courage:A spotlight on people living with rare mutations of CF and what we can learn from their courage, spirit, and passion for life.
Saturday, February 27
Rare strength:Examples of the strength of community and and what has been achieved by leaders, experts, and individuals coming together.
Sunday, February 28
Rare opportunity:How supporting organizations like EE provide an opportunity to be part of something extraordinary.
In addition to EE’s digital campaign, EE co-founder Emily Kramer-Golinkoff kicked-off Rare Disease Week early by taking part in Fingerpaint’s Rare Disease Panel on February 17. Emily joined a multi-stakeholder panel of CF experts for a discussion about connection and rare disease. See more about the event here.
We invite you to join us in celebrating Rare Disease Week 2021 by showing your commitment to rare disease, sharing information about rare disease with others, and drawing inspiration from the rare community.
EE extends a huge thank you to presenting sponsors Vertex Pharmaceuticals, Inc. and Viatris, as well as Translate Bio, for their support of “Rare is Everywhere,” EE’s 2021 Rare Disease Week Campaign.
THANK YOU TO OUR RARE DISEASE WEEK PRESENTING SPONSORS