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Lessons Learned from Rare Disease Week

Viewpoints
2/27/2020

Rare Disease Week on Capitol Hill officially started yesterday, and an incredible group of people arrived in Washington to drive progress and expand support. There is no shortage of inspiration, and watching people unite in person is an emotional experience.

Every story seems plotted out like the hero’s journey—patients and caregivers make the difficult decision to do whatever it takes, and this leads them down a path of trials and tribulations. One thing that is common to every effort is impact.

Over the course of initial meetings, we’ve heard so many stories from stakeholders. There are the patients who have traversed the globe looking for something as simple as a diagnosis. When they finally get one that is correct, they have to travel further still to find providers who know anything about their condition. It is both astounding and disheartening to hear from so many rare disease patients about how they had to educate their doctors about their own disease.

As we all know, the rare disease community doesn’t waste a lot of time waiting for the cavalry. Diagnosis leads to action, and patients and caregivers have created so much progress through their efforts that they have fundamentally changed the way treatments are created and administered. These achievements are on full view at Rare Disease Week.

We get to celebrate all the victories and join together in the fight for more. There is still much to be done. The best part about being at this gathering in DC is seeing these advancements occurring in real time. The collective voice of so many communities makes us realize that there is much more power in what we can accomplish together versus what we can accomplish independently.

In a data-driven space, there is constant talk about the power of information, about the advances we can make with EHRs, trial information, natural histories—the list goes on and on. All those innovations are crucial, but to see the power of people coming together inspires awe. It is the greatest display of tangible hope, people taking action and literally changing the world. Normally that kind of sentiment seems cliché, but seeing this kind of gathering melts cynicism, fosters gratitude, and inspires an optimism for the future of medicine and humanity.

Sefton Eisenhart
Sefton EisenhartAuthor
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