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Eye on the Future 2020: a new chapter in our commitment to patients with IRDs

A profile image of Daniel de Boer

At ProQR we know firsthand how it is to live with a rare disease. 10 years ago, one of my children was diagnosed with a rare genetic disease that had no treatment options. This impactful event in our personal lives led me to start ProQR Therapeutics in 2012, with the goal to create a mission driven company that develops transformative medicines for rare diseases that have no treatment options available.

A profile image of Daniel de Boer, CEO of ProQR.

As we are entering our eighth year of existence as a company, we stand in the center of the Inherited Retinal Disease (IRD) community, shoulder to shoulder on a mission to develop medicines for those who suffer from IRDs. Daily we interact with patients, caregivers, families and healthcare professionals from different disease areas and are continuously integrating the learnings from these experiences in our work.

One of the common themes in our interactions is the path to diagnosis. The journey to get a diagnosis of a rare disease can be a lengthy process. From my experience, outside of expert centers, very little is known about rare diseases, patients and their loved ones can experience extensive periods of uncertainty, sometimes years, until a correct diagnosis is made. To enhance the opportunity of getting a diagnosis we have joined forces, with the Foundation Fighting Blindness on an open access genetic testing program, accessible to all patients with an IRD in the United States. Through the “My Retina Tracker” program patients and their physicians can get a genetic diagnosis of their disease, free of charge. With this program we hope to reduce the uncertainty of a diagnosis journey and help patients to get an insight into treatments and clinical trials they may be eligible for. More information on the program can be found by following this link: www.fightingblindness.org/open-access-genetic-testing-program.

We are looking forward to reconnecting with the global IRD community at this year’s Eye on the Future Forum and deepen our relationships on our shared mission to make an impact to the lives of individuals living with IRDs.