What raising awareness means Rare Disease Day 2021

Even in lockdown we have been working hard as ProQRians to stay connected to the inherited retinal disease community. Rare Disease Day is a unique awareness day due to its global reach and significance.

A collage of four ProQRians on a purple background. From left to right: Daniel de Boer, Eleni Skandalaki, Andy Bolan and Marko Potman. At the top left is the logo of Rare Disease Day

What is Rare Disease Day?

Rare Disease Day takes place on the last day of February each year. With the objective to raise awareness amongst the public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Inforgraphic: 300 million people with rare diseases, 103 countries with events, thousands of events worldwide, 1,200 stories to discover.

ProQRians for rare diseases

ProQR played its part this year through personal interviews from ProQRians on what inspires them to work in rare disease. ProQR is a biotechnology company dedicated to changing lives by developing RNA therapies for rare blinding disorders such as Leber congenital amaurosis, retinitis pigmentosa and Usher syndrome.

Bringing ProQRians out from behind the laboratory glass is a way to show the human faces behind the ground-breaking RNA science.

On this day I feel closer to the rare disease community

Eleni Skandalaki, lab manager at ProQR

A window into drug development for rare diseases

The four videos allow us as a company to show the different parts of ProQR. From Daniel, our CEO, to Marko our Associate Scientist in the Drug and Delivery team. From Andy, our Associate Director for Patient and Medical Community Engagement, to Eleni our Lab Manager in the Analytical Development & Quality Control Lab.

Rare Disease Day gives us as ProQRians a chance to share what motivates us to work in rare disease.

The videos are a window into our world. From working on drug compounds that are being tested and used with retinal organoids, to working with individuals living with an inherited retinal disease. Each part of the rich tapestry of research can be shown and celebrated.

Andy Bolan's message for Rare Disease Day 2021

"Rare is Proud!"

Scientist Marko Potman on working in rare diseases

"That's the most amazing part of my job"

Lab manager Eleni Skandalaki on her inspiration

"This day is an opportunity for scientists and patients to come together"

CEO Daniel de Boer on the rare disease community

"I started ProQR when one of my children was diagnosed with a rare disease"