It’s Rare Disease Day 2022 today. Marked annually, Rare Disease day serves to improve awareness of rare diseases and drive better access to treatment – from diagnostics to therapies – for individuals with rare diseases, and to give them better medical representation.
Having a rare disease, contrary to what the name suggests, isn’t that rare. Over 300 million people world-wide live with a rare disease, which means increasing awareness is more important than ever. It is everyone’s responsibility to do what they can to share the rare disease message far and wide.
A culture of caring is deeply rooted in my company, PQE Group’s, core values and we have a mission to shine a light on the impact of rare diseases on the lives of so many. As a life sciences leader we believe we have a responsibility to give people with rare diseases a voice, and not just on Rare Disease day.
Five years ago we took our first steps towards actively doing something about it (in 2017) when we joined forces with Rare Partners, an organization dedicated to the development of new therapies and diagnostics in the field of rare diseases. We are helping them in their mission to combat rare diseases through research and development and support, by matching financial resources with industrial drug development expertise.
We directly contribute to Rare Partners’ work through funding and assisting with charity projects, and we indirectly participate in various social awareness initiatives to sensitize communities about childhood and adulthood rare diseases.
We promote Rare Partners testimonials’ campaigns worldwide, every year. This year we are putting a spotlight on my friend, Alessandro Menella, who suffers from Usher’s Syndrome type 1. Sufferers of this disease are born deaf and struggle with their balance. Alessandro has also become substantially visually impaired as he has grown up. Now 37, he says he’s never seen his deafness or blindness as obstacles to overcome but just as characteristics of his life.
I hope that telling the stories of people suffering from rare diseases, and highlighting their journeys, will inspire others to take action. As part of this drive, we have made our offices in Italy available to host a traveling exhibition to sensitize clients, employees and the community to the impact of Usher’s Syndrome and the importance of research into diagnostics and treatments.
We use our platform and resources to give people with rare diseases a voice, and we’d like to encourage other businesses and individuals to do the same. We need to go beyond words, this Rare Disease Day, to take action that will have a long-term impact.