Creating a Lasting Network for the Rare Disease Community
Advocacy Advocacy groups have helped rare disease patients find care and vital information. More than a conduit for networking, they have the potential for wide reaching impact.
A trailblazer in the rare disease community, Nicole Boice understands how to connect people and unite a cause.
Creating a community
Boice is the founder and CEO of Global Genes, the Southern California-based nonprofit dedicated to aligning rare disease patients with doctors best suited to their needs. And over the last decade, she’s created a self-sustaining community that’s a haven for support and progress.
“The concept came to me after dear friends of mine were told their son had Joubert syndrome — and it was revealed after years’ misdiagnoses,” Boice says. “The uncertainty was heartbreaking.
“During that process I learned that there were 7,000 different known rare conditions that affected millions of people worldwide. Here was this massive group, and no one was talking about them. I knew these people needed a voice.”
“'Here was this massive group, and no one was talking about them. I knew these people needed a voice.”'
Events for hope
Boice and her team host the annual Tribute to Champions of Hope Gala, which celebrates the heroes, activists and great achievements in the rare disease community. The Global Genes team also launched the inaugural Rare In The Square in early 2017, presenting dynamic networking opportunities at the JP Morgan Health Conference in San Francisco.
The nonprofit continues to grow and gain momentum. Adds Boice, “My personal goal is to create critical partnerships and collaborations with global organizations that can help identify new patients and make sure they’re supported. We want to generate new ways to raise awareness and funds for the rare disease community.
“There are virtually no cures,” she sums. “And that’s unacceptable.”