Last week, our Chair of Trustees Jackie Tomlinson went along to find out more about the 1st scientific networking evening hosted by Findacure, a registered charity working to build the rare disease community to drive research and develop treatments.
The networking session focused on drug re-purposing for rare diseases. Did you know that alopecia totals and alopecia universalis, along with many scarring types of hair loss are registered as a rare disease?
"It was an informative line-up that opened up discussion and allowed the audience direct contact with scientific professionals and the exchange of contact details. Findacure is a movement to promote the search and development of treatments on behalf of patients. Their key aim is to empower patient groups to evolve into effective campaigners for change. It was good to get an overview and begin to make connections within this community.
There was a request to submit ideas for drug re-purposing and I jumped at the opportunity to inform the group about Columbia University's research regarding JAK inhibitors, as this is a good example of a drug being re-purposed for a rare disease. My goal would be to see re-purposing research within the UK for rare hair loss diseases. I'm glad I attended the event and, as ever, it was great to meet the other patient support groups in attendance."