ProQr Therapeutics Honors Pioneering Co-founder on Rare Disease Day

Boston-based ProQr Therapeutics marked Rare Disease Day with an event commemorating one of its co-founders, rare disease pioneer Henri A. Termeer.

The company develops treatments for such rare diseases as cystic fibrosis and dystrophic epidermolysis bullosa by creating transformative RNA medicines.

Celebrated on the last day of February every year, Rare Disease Day is an occasion for patients, their families, patient organizations and healthcare providers to think about steps that have been taken, and that need to be taken, toward cures for rare diseases. It’s also a time to raise awareness of the disorders.

The theme of this year’s Rare Disease Day on Feb. 28 was Research.

Termeer was a visionary in the field. He co-founded ProQr in 2012 and was vice chairman of the supervisory board when he died unexpectedly on May 12, 2017.

It is fitting that Feb. 28 is also his birthday. His family, friends and associates joined together this year to rename a Boston-area plaza the Henri A. Termeer Square. The plaza is across from the Genzyme Center in the suburb of Cambridge, Massachusetts.

A former chief executive officer of Genzyme, Termeer helped build the Genzyme Center. In 2019, a life-sized sculpture of him will go up in the square.

“We fully support Rare Disease Day 2018, which will raise public awareness about rare diseases and bring attention to the importance of research to develop therapies for these patients who have no available treatment options,” Daniel A. de Boer, ProQr’s chief executive officer, said in a press release.

“With an estimated 7,000 rare diseases known today and with fewer than 400 available therapies available, there is a dire need to quickly develop and bring to patients the medicines they need,” he said. “On this day, it is a privilege to pay tribute to Henri, a good friend and mentor and pioneer in rare diseases. We plan to honor his legacy through completing the mission that we set out on together.”

Another way that ProQR celebrated Rare Disease Day was holding a special lunch at its headquarters in Leiden, the Netherlands, for a family affected by a rare genetic disease called Leber’s congenital amaurosis 10. The condition is the leading genetic cause of blindness in children.

Rare Disease Day has been a global event since its inception in 2008. You can find a rundown on this year’s events here.