Global Commission

to End the Diagnostic Odyssey for Children with a Rare Disease

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Learnings from ECRD 2020

At the 10th European Conference on Rare Diseases (ECRD), I had an opportunity to share my thoughts in a keynote on a topic near and dear to me: new approaches that integrate our life languages to shorten the diagnostic odyssey. From birth we communicate with each other through languages including written, oral and body language. Together, these types of communication make up our life’s languages.
The languages of our DNA, faces and the written word are universal and fundamental to the health and well-being of children living with a rare disease worldwide. The precise and culturally-safe use of these languages is critical to allow for the timely diagnosis of a rare disease, and ultimately facilitates the improvement of the lives of individuals that have one of these conditions.
I spoke to attendees from across the rare disease space ranging from patients, to clinical workers, to policymakers about the importance of bringing forth new approaches that integrate our life languages, and the need for these approaches to be scalable. It’s important these methods support applications for remote diagnostics and allow for integration with Indigenous languages for equitable access and culturally safe care.
I found it very valuable to hear from some of the most influential global representatives in this field about how to inform and build the future ecosystem for rare disease policies and services. Across the eclectic talks I was able to tune-into, one common theme stood out to me: collaboration across sectors in the rare disease space is key to bringing forward revolutionary technology and new ways of thinking. The power of people, partnerships policy and technology resonated once again. Given the unprecedented challenges that now impact the journey for a rare disease patient, we must embrace collaboration and remain focused on our shared goal of ultimately delivering life-changing treatment to patients in the most equitable way possible. Including for Indigenous people through approaches such as Lyfe Languages.
I truly enjoyed my time at ECRD and am excited for the global rare disease community to come together to take steps toward shaping future policies that have the potential to equitably transform the lives of those living with a rare disease.