Rebecca Skarberg
European Patient Advocate, EURORDIS
The Rare 2030 Foresight Study has set the direction for a future based on needs-led innovation and collective responsibility.
I write as one of many, but in society I am one of few. I am rare. I live with Osteogenesis Imperfecta, a rare disease that means my collagen has the wrong recipe. This makes my bones break, my breathing compromised and my stature short. What does that mean? How does it impact my life? More importantly: if I could wake up in a perfect world tomorrow, what would it look like?
Over the past two years I have helped define this perfect world through the Rare 2030 Foresight Study. Together we have tried to paint a picture of what it’s like to live with or care for someone with a rare condition, or work within the field. Together we also identified trends responsible for the progress we see today, and those that will enhance or disrupt our lives over the next decade.
Innovation and solidarity
Two clusters emerged: innovation and solidarity. In the future, innovation can be needs-driven or market-driven. Solidarity can be left to the individual or a joint effort. The dynamic between innovation and solidarity is where the Rare 2030 Foresight Study proposed four scenarios for our future.
Our quality of life is defined by more than just genetic misspellings and symptoms. It’s also about community, independence, empowerment and fulfilling your potential.
Some of these scenarios have already played out – for better or worse – in my life, and the lives of those I love. As we turn to technology, we can connect more as a community, but are we left more vulnerable to being overexposed, as we’ve seen with breakthrough treatments, which are developed at an extraordinary price and in the hands of few?
The world I want to live in
Innovation that is needs-led, but also a joint responsibility, will lead to a future that leaves no one living with a rare disease behind. We define priorities together because we, as people with rare diseases, depend on each other. Our quality of life is defined by more than just genetic misspellings and symptoms. It’s also about community, independence, empowerment and fulfilling your potential.
Beware that no matter what our future holds, there will be trade-offs. Join me in working towards tomorrow’s world.
