Working together to create positive change in rare diseases

Every four years, Rare Disease Day lands on the ‘rarest’ day of the year, 29^th February. Due to leap years, this day is normally celebrated on 28^th February, but this year means it is taking place on its intended day. While people around the world recognize, celebrate, and come together this time of year to spotlight the rare disease community, we cannot forget that those with a rare disease experience this every day from the months and even years before diagnosis. Life with a rare disease is challenging for those both living with it and caring for someone.

At Ipsen, we stand alongside those living with and caring for someone with a rare disease. Each and every individual is unique and that’s why our approach is unique. This year we were joined by Alexandra Heumber Perry, CEO of Rare Diseases International (RDI) who shared her insights and thoughts on the challenges in the international rare disease environment.

Watch our fireside chat, where our Global Head of Public Affairs and Advocacy, Jan Swiderski and Alexandra discuss the role of patient organizations like RDI in supporting patients. Alexandra and Jan talk about how we can work together to create positive change in the next four years, when Rare Disease Day next lands on the ‘rarest’ day, to improve the lives of people with a rare disease.

This year, Ipsen employees around the world also united together to support EURORDIS’ ‘Rare is Many’ theme, to recognize the challenges faced by those living with a rare disease. Our colleagues shared their own messages of support on the many challenges, and decisions that the rare community face each day.

We see each and every person living with a rare disease and will continue to advocate for the cause: rare but not alone.

Watch the video below to hear from our colleagues this Rare Disease Day: