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.
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.
What is Rare Disease Day?
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
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"