The Advocacy for Neuroacanthocytosis Patients had the privilege to be selected to be part of a partnering event specifically organised for rare neurology/central nervous system (CNS) diseases organised by Aspire Biosciences in London, at the Royal Society of Medicine on 15 October 2024.

In this all-day event, the organisers are looking to enable partnerships between rare disease patient organisations and life sciences companies.

There were eight charities and nine life sciences companies this year. Each patient organisation presented their ‘elevator pitch’ about who they are, what’s their mission and most importantly, what are the unmet needs of those they represent (general; family and patient related; clinical research, and basic science related). Our presentation was prepared by Ginger Irvine, Chair and Co-founder, Professor Dr Adrian Danek, Trustee, and Despina Dinca, Charity manager. Then the life sciences organisation followed with their elevator pitch where they explain what their research focus and interests are.

Once all the introductions were made, each charity had a 12-minute session with each life science organisation to explore the areas of interest which could be matched. Although attendees are carefully selected, not every organisation is expected to be within the matching range. The offers are very diverse and cover various stages of science and research and a charity organisation may or may not be at that stage in their own existence.

It was a fruitful day for us! We were matched with three organisations with potential for immediate collaboration and we’re already following up with other three organisations to explore further adjacent/future opportunities.

While we’re bound to some confidentiality about our conversations for now, we’ll be sure to share and keep you posted about how these potential collaborations will be evolving in our next NA News as well as on our social media channels. Stay tuned and keep the conversations going with us!