'Light up for Rare' spotlights rare disease to help break the isolation COVID has wrought

It’s the last day in February, and that means it’s time to shine a light on rare disease—literally, in the case of "Light up for Rare."

Today, you might just get to see the Rare Disease Day colors of green, pink, purple and blue across pharma companies and major landmarks.

Using these colors, designed to symbolize the diversity of the rare disease community, to light up well-known monuments and public buildings is intended as a strong message of solidarity.

First celebrated in 2009, Rare Disease Day is always the last day of February. Every four years it falls on the 29th, which was the initial “rare” date chosen for the event. This year the date is Monday, Feb. 28.

Any organization can sign up, but pharma has in recent years been keen to get involved, as it can quite literally help shine a light on the sorts of diseases it treats.

The campaign is run by the European Organization for Rare Diseases and the National Organization for Rare Diseases (NORD) counterpart in Europe, and forms part of the "Global Chain of Lights" campaign, which aims to unite the rare disease community across the globe.

This year, too, NORD says it also “aims to symbolically break the isolation caused by the COVID-19 pandemic to these patients.”

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Rocket Pharma has been big on Light up for Rare, helping shine light on two of the world’s biggest buildings and monuments—namely, the Empire State Building and Niagara Falls—last year.

This year, Rocket is hosting a Rare Disease Day celebration Feb. 28, live from the Nasdaq Tower overlooking Times Square.

Speakers include Moris Danon, M.D., founder of Danon Disease; one of the biotech’s four clinical programs is in Danon Disease, a condition that causes weakening of the heart muscle, or cardiomyopathy.

The biotech told Fierce Pharma the COVID-19 pandemic has “undoubtedly presented challenges for the rare disease community,” making these types of campaigns even more important.

Light up Rare “helps start a conversation about rare disease and fosters solidarity and hope among the rare disease community," the company said.

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BioMarin is getting in on the act, too, illuminating its sites at its Ireland bases, Shanbally in Cork County and Earlsfort Terrace in Dublin, as part of the campaign.

BioMarin is a rare disease specialist now launching its dwarfism drug Voxzogo.

A rare disease is defined as a life-threatening or chronically debilitating illness that affects fewer than 1 in 2,000 people. It’s estimated that around 5% of rare conditions have an approved therapy, and pharma would dearly love to bump those stats upward.

Rare disease treatments can be a highly lucrative market space for pharma, with single treatments often costing hundreds of thousands of dollars, given the small patient population. Take a drug like Soliris: This made just over $4 billion last year and has approvals to treat a number of severe rare and ultra-rare conditions, such as neuromyelitis optica spectrum disorder, a condition that attacks the central nervous system.

It was the jewel in the buyout crown for AstraZeneca, which snapped up its maker Alexion for $39 billion last year.