Rare Disease Day: Cambridge BioMarketing Projects Patient Portraits in Boston’s City Hall Plaza

To commemorate Rare Disease Day on Thursday, February 28, 2019, Boston-based Cambridge BioMarketing hosted a larger-than-life light projection in Boston’s City Hall Plaza featuring the portraits of five rare disease patients. Inspiring conversation and driving awareness to the more than 7,000 rare diseases worldwide, executives, members of the agency’s creative team, and patients who appeared in the installation attended. The projection event honored the day with sentiments of strength and hope, designed to put real faces and stories to the concept that is unimaginable for many of us: Living with a rare disease.

Aiming to raise awareness for rare diseases, the installation featured the portraits of:

  • Diane: Daughter, sister, friend, and advocate living with familial chylomicronemia syndrome (FCS)
  • Francesca: Daughter, athlete, student, and friend living with familial partial lipodystrophy (FPLD)
  • Bella: Sister, dog-lover, daughter, and friend living with Morquio A syndrome
  • Arista: Twin, daughter, fiancée, and friend living with hereditary angioedema (HAE)
  • Christian: Son, brother, and friend living with hemophilia A

Each of their portraits, along with their first name and condition, were projected on the side of the City Hall building from 6 p.m. to 10 p.m. Additionally, the campaign directed people to the website facesofrare.com to learn more about each of the patients featured.

On Rare Disease Day, Boston got to meet Francesca, one of the many faces of rare living with familial partial lipodystrophy (FPLD).
Arista, a hereditary angioedema (HAE) patient, tells her story to local media.
Bella, a Morquio A syndrome patient, and her support dog, George, featured in the projection installation at Boston’s City Hall Plaza.
This is the 12th anniversary of Rare Disease Day, which is annually held on the last day of February.
The installation at Boston’s City Hall Plaza served as a vehicle to inspire awareness and advocacy and played a part in connecting patients with treatments and life-saving medicines.

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