Our inaugural RAREAware Conference was a huge success, which was held in the James McCune Smith Building on Saturday 18th March.
We had expert speakers sharing their knowledge on rare diseases including consultant endocrinologist Dr Marie Freel and biomedical sciences lecturer Dr Simon Hettle. We also had various patient stories, sharing their experiences of rare diseases from Lauren Scott, whose daughter has the rare neurodevelopmental disorder Rett Syndrome, to Lynsey McLuckie, who looks after her daughter who has Tuberous Sclerosis Complex, a rare genetic disorder affecting the brain and various other parts of the body. We were also lucky enough to have Dylan Lombard, an accomplished photographer who is one of only 16 in the world to have MDP Syndrome, an extremely rare genetic metabolic condition.
In the afternoon, we had a circuit of workshop stations ranging from communication skills stations and a British Sign Language lesson to a genetics quiz and clinical trials station. We also offered the ability to practice venepuncture while being guided by a trained professional. There was even a station giving the opportunity to sit down with Dylan and ask him any questions.
Overall, our first conference as a society was a wonderful day filled with opportunities to explore the world of rare diseases and we'd like to express our thanks to everyone who came to our conference, all your kind feedback, and of course, thank you to all the amazing speakers we had who really made the event! And a big thank you to all those who made the conference happen! Some photos from the day are posted below. We hope to see you sson at our future events!
