The organisers of Connect in Pharma have announced that for every visitor to the Geneva-based event, five Swiss francs will be donated to EspeRare Foundation, a not-for-profit organisation that identifies, develops and promotes access to life-changing treatments and technologies for patients affected by rare diseases.
Connect in Pharma, a new event for the pharmaceutical and biotechnology community taking place 14 & 15 September 2022 in Geneva, will also host the premier of a photography exhibition entitled ‘Days of Rare’. The exhibition will feature photos and video interviews with individuals who are affected by rare diseases, like 15-year-old Tayen featured in the exhibition poster.
Living with hypohidrotic ectodermal dysplasia—a genetic skin disease that leaves Tayen with a reduced ability to sweat and regulate body temperature—is something she now takes in her stride, but this was not always the case.
Tayen says: “It really did upset me at times, but now they can say what they want. It literally doesn’t affect me. 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 is the work of SbD Creative, an award-winning creative agency that specialises in working with people with rare diseases to tell emotive, person-centred storytelling.
Photographer and director of SbD Creative Ceridwen Hughes and her team created bespoke scenes for each person that aimed to bring in quirky 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,” says Hughes.
Renan Joel, divisional director at Connect in Pharma, says: “We are honoured to be partnering with both EspeRare and SbD Creative to raise funds and awareness for rare diseases. I was so impressed by both these organisations in the way they remind us how research and production of new drugs can make a life-changing difference for individuals in this underserved community.”
In addition to donating five Swiss francs for every attendee that comes through the doors of Connect In Pharma on 14 or 15 September, the event will also provide opportunities for exhibitors, partners and others to learn more about and support EspeRare and its research into treatments for diseases such as Tayen’s rare condition. The organisers aim to raise 20,000 Swiss francs in total and increase awareness of the cause.
The support from Connect in Pharma will “make a very concrete difference,” says EspeRare founder and executive director Caroline Kant. “Twenty thousand Swiss francs is the amount we need to initiate early-stage research for a new drug development programme and attract the needed public and philanthropic funding to further progress its development. Ultimately, these funds can have a rippling effect that may be life changing for a whole patient community.”
Kant says she first spotted the stunning work of SbD Creative’s founder Ceridwen Hughes about five years ago and is thrilled to finally work together through Connect in Pharma.
“I cannot imagine better work to exemplify in a visual sense why we are all so committed to these patients,” Kant says.
Kant and Hughes share a dedication that is personal. They are both mothers to children with rare diseases themselves, and they both are rooted in understanding the need to work in collaboration with the rare-disease patient population and their families.
“The beauty of working in rare diseases is that we have the honour of working with these young people and their families, who are all so brave and generous. We at EspeRare are just trying to live up to their strength and dedication.”
