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Many diseases have their own color of consciousness – breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example – but what is the significance of the pink, green, blue and purple lights side by side?

These are the colors most often used to represent Rare Disease Day. This year, hundreds of buildings, monuments and landmarks around the world were illuminated in a unique combination of colors on and around February 28 to help raise awareness of this diverse group of unrest, which affects an estimated 300 millions of people around the world.

Non-profit organizations and companies have supported the lighting of monuments in their respective countries under the aegis of EURORDIS-Rare Diseases Europe. The National Organization for Rare Disorders (NORD), for example, sponsored the U.S. initiative through its Light Up for Rare campaign.

“Seeing all these monuments illuminated for Rare Disease Day underscores that rare disease patients are not alone and by coming together we can do so much more to shed light on rare diseases, discover new treatments and improve health. ‘access to equitable care,’ Lesli Nordstrom, NORD’s director of marketing and communications, said in an email to BioNews Services, publisher of this website.

EURORDIS ‘official tally showed at least 450 buildings and monuments bathed in colored lights, although more participated without notifying the organization, making it difficult to get an exact number.

NORD created the concept in 2019 with help from Rocket Pharmaceuticals when a request from the company lit the Empire State Building in New York City in rare disease colors.

“The wonderful thing is that we have received messages from all over the world on Facebook and various social media that these patients around the world feel that the Empire State Building recognizes the hardships they are going through on a daily basis. the day, ”said Kinnari Patel, president of Rocket Pharma. and COO, in a video interview with NORD. “Right now, they felt supported.”

This year marked the first time that NORD has provided support to advocates interested in lighting up community monuments through the Light Up for Rare initiative.

Light Up for Rare aims to use the power of social media and popular advocacy to reach people virtually regardless of their connection to a rare disease. The initiative is part of the Show Your Stripes campaign, launched by NORD in 2019, with the aim of getting patients “to show their support and awareness for Rare Disease Day,” said Pamela K. Gavin, director of NORD’s strategy, in the video. .

Although NORD did not directly sponsor any Light Up for Rare buildings, the organization advertised them as part of its Show Your Stripes campaign and encouraged those affected by rare diseases to pledge a location, complete application forms to illuminate the public building and to share photos. on social networks.

One of those rare disease advocates is Pam Judge, who started the Connor B. Judge Foundation which raises awareness about neuromyelitis optic spectrum disorders. The judge successfully secured the Rock and Roll Hall of Fame and Tower City Center in Cleveland, Ohio, to show the colors for Rare Disease Day.

It was easy enough to light up the two Cleveland landmarks, Judge said in a phone interview with BioNews. She had to fill out a form and be affiliated with a national foundation, such as NORD. The only difficulty was knowing where to access the forms, she said.

The impact for the judge, however, was substantial.

“All the rare diseases separately, we can’t really move the policy, we can’t move the drug companies,” Judge said. “But together, under a big umbrella that fights for us, we can all get things done faster.”

In the United States, landmarks such as MetLife Stadium in New Jersey, the National Institutes of Health Building 1 in Bethesda, Maryland, and the Gov. Mario M. Cuomo in New York wore all the Rare Disease Day colors this year. with the Empire State Building.

Points of interest around the world, including the Leaning Tower of Pisa in Italy, the CN Tower in Toronto, the Nkrumah Mausoleum in Ghana, and Hylton Castle in the UK, were also equipped with many lights in the official colors of the Rare disease day.

Rare Disease Day was created by EURORDIS in 2008 on the rare leap day of February 29. For the past 13 years, the global rare disease community has used the last day of February to raise awareness about the challenges of living with a rare disease and the lack of available treatments.


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