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Rare Disease Day | Ashfield

Rare Disease Day is celebrated on the last day of February every year. The purpose of the day is to raise awareness amongst not only the rare disease community, but the general public in the hope of raising much-needed funds for research.

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. (Rare Disease Day, 2019). As a lot of patients with a rare disease can feel very isolated due to their illness, the day is dedicated to recognizing and supporting them on their journey.

One of our agencies Cambridge BioMarketing, who specialize in rare diseases, have created the initiative: Rare In Common, that raises awareness for rare diseases and gives people from the rare disease community an opportunity to tell their stories, including documentaries, podcasts, outdoor installations, and more. Every year, the Rare in Common initiative forms a new campaign in time for Rare Disease Day, in order to tell the stories of those who affected.

Last year, Cambridge BioMarketing launched a series of podcasts under the Rare in Common brand, two years after they launched the Emmy-nominated documentary of the same title. The Rare in Common podcasts features patients, caregivers, and physicians from the rare disease community. Click here to listen to the podcasts.

This year Cambridge BioMarketing have created a campaign called the #FacesOfRare. They have interviewed five people from different walks of life who all live with a rare disease.

People featured:

Diane A daughter, sister, friend, and advocate living with familial chylomicronemia syndrome (FCS).

 

 

 

 

 

 

 

 

 

Francesca A daughter, athlete, student, and friend living with familial partial lipodystrophy (FPLD).

 

 

 

 

 

 

 

 

 

Bella A sister, dog-lover, daughter, and friend living with Morquio A syndrome.

 

 

 

 

 

 

 

 

 

Arista A twin to sister Arielle, daughter, fiancée, and friend living with hereditary angioedema (HAE).

 

 

 

 

 

 

 

 

 

Christian A son, brother, and friend living with hemophilia A.

 

 

 

 

 

 

 

 

 

Diane, Francesca, Bella, Arista and Christian’s stories will be featured across the website facesofrare.com. All of the five individuals will be celebrated in support of spreading awareness on Rare Disease Day at the Boston City Hall Plaza, Massachusetts at 6 pm.

To find out more about their stories, help support and follow live updates from the event on the 28th February, follow Rare in Common on Twitter and Instagram

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