Engage Cares for RARE
Every year, the Global Genes RARE Patient Advocacy Summit is a high point for the Engage Health team. This rare disease conference serves as a unique opportunity for our team to meet patients and their families, determined patient advocates, cutting edge researchers, and industry leaders, bringing them all into the same space… and making visible the needs of rare disease patients and the research community fighting for cures. Being surrounded by a cohort that is so passionate about supporting patients, bringing awareness to under-served disease communities, and spearheading the development of new therapies and treatments to the rare disease community was an awe-inspiring and rejuvenating experience, reminding us why Engage Health works in rare diseases in the first place.
For two of our project managers, Mark and Jordan, this year’s conference was their first chance to see Global Genes firsthand. Jordan says that he was “completely blown away by the stories of strength and determination shared by those who spoke at the conference, and captivated by the fascinating research that soon promises better outcomes for rare disease patients, from cystinosis to sialidosis.” There were countless stories of heartache and hardship, but even more tales of the humbling human capacity for strength and ingenuity; they heard about patients who overcame immense obstacles, advocates who simply refused to give up, and doctors who pushed the bounds of what was considered possible to help get patients the care that they needed.
One such example was Simon Wheatcroft, a man born with the genetic condition known as Retinitis Pigmentosa, a degenerative ocular disease that developed progressively into blindness. Simon exhibited breathtaking determination in the face of this debilitating disease; by not only not giving up, but by becoming the world’s first blind ultra-marathon runner. He refuses to let his condition keep him from doing what he loves, and by speaking to people all around the globe, serves as an inspiration to the rare disease community, reminding everyone who hears his story that the border of what’s possible is as permeable as one chooses to see it.
When hearing Simon’s story, and those of so many others at Global Genes, one of our project managers, Mark, said that he was “humbled to share the same space with such intelligent and passionate people, all while learning everything that I could from the leaders of the rare disease community.” The entire Engage Health team has returned to Minneapolis with a greater sense of purpose and a newfound vigor for affecting positive change for all those affected by rare diseases.