In an unusual move for a company focused on packaging and contract manufacturing, Connect In Pharma is running a new art exhibition and campaign aimed at rare diseases.
European company Easyfairs is running the Connect In Pharma event, which sells itself as a “market tool” for life science companies, in mid-September in Geneva. Ultimately, it is designed to show up its capacity to help pharma companies with their manufacturing, drug delivery and packaging.
But it is also taking the unusual step of using this event to also host the premier of a photography exhibition entitled “Days of Rare.” This exhibition will feature photos and video interviews with individuals who are affected by rare diseases.
This includes stories such as the one from 15-year-old Tayen, who is featured in the exhibition poster (and pictured above) and has been diagnosed with hypohidrotic ectodermal dysplasia, a genetic skin disease that leaves her with a reduced ability to sweat and regulate body temperature.
“It really did upset me at times, but now they can say what they want. It literally doesn't affect me,” she explained in a statement.
“I know that they're not bullying me as a person, but they are bullying me because of my condition and that makes me feel slightly better. From having my condition my whole life, I've learned as I've got older that actually, it doesn't matter that I'm different. Because we all are different.”
The exhibition comes out of the agency SbD Creative. Photographer and Director of SbD Creative Ceridwen Hughes and her team created bespoke scenes for each person that aimed to bring in the “quirkier” elements of their condition. “Our goal is to take the viewer on a journey that ultimately encourages them to want to know more about the person and the impact of their rare disease,” said Hughes.
“I came across the work of Ceridwan several years ago,” said Renan Joel, who is the divisional director of the U.K., France, Italy and Switzerland at Easyfairs, in an interview.
“She specializes in working with the rare disease community, and the work shows such care and respect for the people she puts in front of the lens. She clearly brings such compassion and respect for the rare disease community to her work.
“Her photographs and multimedia pieces leave you wanting to know more about her subjects as people, and we see them as so much more than just their disease. It’s fascinating and beautiful.”
There is also a fundraising element to the exhibition: Connect In Pharma said it will donate five Swiss francs for every attendee that comes through the doors of its event to the EspeRare Foundation, a not-for-profit organization for rare diseases.
It’s also set up to help boost awareness of EspeRare and its research into treatments for diseases such as Tayen’s. The organizers aim to raise 20,000 Swiss francs in total.
“I first heard about EspeRare and their work to develop drugs for rare diseases from a conversation I had with Magali Bischof from BioPole, which is an association supporting the life sciences hub found in western Switzerland,” explained Joel. “It’s fascinating work, and it brings up many of the issues our own event will highlight. Plus, it’s important for all of us to remember that there are people—often with amazing stories of persistence and fortitude—whose lives can be profoundly impacted by the work being done by in the industry.”
Rare disease has seen a boon in marketing campaigns this year with Alnylam using a hard-hitting documentary to uncover the plight of those trying to get diagnosed with acute hepatic porphyria, while AstraZeneca’s Alexion hosted a series of events on Rare Disease Day back in February to help boost awareness.