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As a longtime maker of orphan drugs for rare disorders and diseases that affect small populations, San Rafael’s BioMarin Pharmaceutical Inc. has tried out some unusual marketing methods since it was founded 21 years ago.

The company, led by CEO Jean-Jacques Bienaimé, commissioned an “unscripted” documentary film about its history and also published a book that Debra Charlesworth, its vice president of corporate communications, calls an honest “warts and all” look at its birth and growth.

Even so, BioMarin’s quotidian publicity efforts are typically tightly focused on patients and physicians who use its products.

But BioMarin’s latest creative venture – a musical theater production about hemophilia and other bleeding disorders starring high school students – is truly treading new ground.

Hemophilia the musical

BioMarin is paying for a three-day musical-theater training program in New York in November in which 25 high school students from around the country with hemophilia or other bleeding disorders will rehearse six songs and then put on a “Broadway-style performance” Nov. 12.

The idea for the show came about, said Charlesworth, as BioMarin moved into late-stage clinical testing of a one-time gene therapy for hemophilia A and increased its outreach to the wider community of people with bleeding disorders.

People with severe hemophilia are often limited in the physical activity they can do, and this has a big effect on teenagers in high school, said Charlesworth.

“There are certain sports they really can’t play. Sports are a big part of a high school experience, but so are the arts,” she said.

Though BioMarin had been considering putting together some sort of creative performance around bleeding disorders on its own, when the company learned through its contacts in the community that a Los Angeles boutique agency, Believe Limited, was working on a similar project, it joined that effort.

“The alignment was amazing,” said Charlesworth of BioMarin’s meetings with Patrick James Lynch, the CEO of Believe, who suffers from severe hemophilia A himself.

Believe Limited was created around the idea of making “engaging and entertaining content aimed at people with chronic and rare diseases,” Lynch said. His company had already produced a comedic “mockumentary” web series similar to “The Office” or “Parks and Recreation” called “Stop the Bleeding!” and was working on a film called “My Beautiful Stutter.”

Lynch also spent several years filming a documentary about Chris Bombardier, the first person with severe hemophilia A to climb Mount Everest.

Trained as an actor himself, Lynch wanted to do something live on stage for the bleeding disorders community, particularly after seeing the raunchy musical “The Book of Mormon” with his mother.

“There’s such permission in musical theater as an art form,” said Lynch, pointing out that “Hemophilia the musical” isn’t all that far from actual shows like “Menopause the musical.”

Reflecting on his own experience with hemophilia, and the death from a brain bleed in college of his brother, who also had severe hemophilia A, Lynch wanted to create not just a show to teach people about bleeding disorders, but one that used theater to help kids who suffer from them.

“My brother never identified as having a bleeding disorder,” Lynch said. “He pulled back and he disconnected. That cost him his life.”

Lynch himself missed plenty of social opportunities and friendships, and had a difficult high school experience because of bleeding in his joints and other problems from his hemophilia. His later work as a professional actor in New York helped him reflect on his situation, and he hopes to help other people do the same kind of serious thinking, but earlier in their lives.

“I came to appreciate how the lessons learned and skills developed as a participant in theater served me as a person and more specifically as a person with hemophilia,” Lynch said.

Crowdsourced chorus

After a nationwide application process, promoted mainly by Believe Limited via social media and contacts in the bleeding disorders community, said Charlesworth, the 25 participants will be chosen and flown to New York for a weekend of training under Paul Russell, the director of the UK Haemophilia Society choir.

“Our first goal will be to create a sense of community for the 25 teens so that they feel supported, comfortable and valued, thus able to create,” said Russell, who started a company called Standing Ovation Choir four years ago to bring singing and performance into the corporate “team building” arena. He’s done choral sessions already with corporate giants like AIG and Google.

“When you sing the body releases two hormones, oxytocin and endorphin, two key components for a happy and healthy state of being,” said Russell.

Just as singing can be beneficial for employee engagement, it’s even more helpful for teenagers, he said.

“Vocal or musical training is hugely beneficial for kids. It develops the frontal lobe, encourages working with peers as an ensemble and boosts morale and confidence. Kids with bleeding disorders can feel isolated; the arts unite and bring people together,” he said.

Judges, being chosen now from the ranks of executive directors of bleeding disorder organizations around the country, will evaluate potential participants based on an audition video and an essay. Though it’s a competitive process to get one of the 25 slots, said Lynch, the idea isn’t to create a competition. Nevertheless, “there will be some hard choices,” he said.

Five slots in the show will be reserved for people who don’t have bleeding disorders, but who are siblings or children of people with hemophilia or similar conditions.

“Bleeding disorders affect a whole family,” said Lynch.

Unlike professional actors arriving on Broadway to sing in already-written musicals, the high school students at this workshop will face another challenge – they won’t just have to learn the songs, but first they’ll have to help make them up.

One question on the application for the workshop asks “What would you like to see in a six-song musical about hemophilia?” and Lynch said those answers will be used to create the content for the show.

That “crowdsourcing,” as Charlesworth called it, is a vital part of the workshop, which is technically named “Breaking Through!” although she and others sometimes refer to it as “Hemophilia the musical.” The idea is to push the participants to reflect on their lives and put forward ideas they think should be heard about bleeding disorders.

And although the idea of a musical theater production about bleeding disorders might seem like an out-of-the-box marketing idea for BioMarin, she doesn’t see it as that different from the other types of outreach the company has made.

“Because we’re in rare disease, we don’t do advertising. The common thread in all of this is the involvement and partnership with the community,” she said. “It’s all focused on the community.”