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MassBio’s Rare Disease Day Recap: It Takes a Village

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Consider the reality: Rare diseases affect 350 million people in the world.There are over 7,000 diseases that are considered rare. Only 5 percent of these have FDA-approved treatments.

rare disease dayI’ve seen it. I know people who have tried the cocktails of medications. They’ve thrown disparate solutions together that are supposed to concoct their one answer: fixing them. But sometimes there isn’t an answer, not even a question to answer – no diagnosis. It can take rare disease patients over eight years to receive a diagnosis. And sometimes the one they receive could be wrong.

So, in reflection of Rare Disease Day 2019, it’s important to consider where that conversation starts. Where do these people – without answers – find hope? After attending MassBio’s Rare Disease Day event, I can tell you their answer: with one another. Together, they never give up. Their shared experience of facing these unique and uncured medical difficulties unites this community. Their hope is derived from sharing their stories with each other and to the public while providing clinicians, researchers and regulators with information they need to create a breakthrough medication. But more than that, life gives them hope. At least they’re here.

They relish the little moments, allowing their lives to be filled with beauty, joy and laughter. They are empowered by supportive family and friends. They are unbroken by rare disease.

rare disease day_healthcareThe voice of the patient can resound high and wide if given the stage. For instance, PAN’s client Cambridge BioMarketing utilized Boston’s City Hall Plaza as a canvas to quite literally show the faces of rare disease and give them the opportunity to tell their stories on Rare Disease Day. The brand’s #FacesOfRare campaign featured photos of five rare disease patients of varying backgrounds projected onto the building 10 stories tall. Publications covering the unique activation, including The Boston Globe, prominently featured these patients and a few local social media campaigns, extending the reach of the project. They had bravely signed up to be a part of this awareness campaign, sharing their personal journeys and putting faces to rare disease.

People with rare diseases have beautiful lives often wrapped into many fewer years than we would hope to be given. These microcosms encapsulating all of life – pain and joy, tumult and hope – show resilience through unbroken spirits. In a dark place, they find hope through each other and a core belief in the possibilities the future holds.

There’s a lot of work to be done to tackle these 7,000 diseases. The good news is there’s a huge community of people who are making noise to make sure this conversation has the traction it needs to rally support from a variety of stakeholders, including FDA regulators, the biotech and pharma industries and research community, and the public at large. We just have to keep making noise and telling stories.

We’re moving the needle on the conversation and making sure the right people are speaking out to inform the regulators and clinicians. But there is a lot still left to be done. I’m proud of PAN’s contribution to making campaigns like #FacesOfRare so loud, and for helping to get a stage for the people who have something to say in this conversation.

It was an incredible experience to see the patients working with Cambridge BioMarketing in City Hall Plaza, staring up at their smiling faces across the cold concrete jungle. We talked to Arista, one of the participants of the campaign, about her face being projected onto a building, and she mentioned she didn’t mind it.

She said, “If I can help one person, it will have been worth it.” – Arista Lee

When the village works together, what we hope for can become a reality.

 integrated marketing and PR healthcare

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