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Successful collaborations, engaging the people that matter

In September 2020, we hosted a three-day online workshop that focused on how patient groups can successfully collaborate with stakeholders from across the rare disease spectrum. The goal of the workshop was to help patient groups collaborate with industry, pharma and other rare disease patient groups so that the rare community can advocate for change as one, united force.

Knowing how many patient group organisations exist with similar ethos and goals across the globe, we wanted to help our patient group representatives understand how they can utilise their global community’s shared passion to connect with people who want to help them and advance their cause.


 Our three-day workshop was kicked off by Findacure CEO, Rick Thompson, who covered some of the basics of engaging with the pharmaceutical industry. It was a great introduction to the next few days, as we learned why working with industry can be so beneficial. We also discussed the different kinds of interactions that can be fostered with pharmaceutical professionals.

Day one of our workshop saw a fantastic talk from Peter Wasson (BioIndustry Association) and Daphnee Pushparajah (Alexion). They described what industry partners are looking for from patient groups and taught us how best to reach out to them. We also learnt about the need for integrity and transparency in all interactions with industry. The day’s talks were rounded off by Taylor Fields (Intrabio) and Will Evans (NPUK), as they discussed the successful relationship between the two and gave us their top tips on successful collaborations.

On day two, we focused on collaborations between patient organisations. We heard great talks throughout the day, with the first being hosted by Becky Jenner and John Sharpe of Rett UK and Reverse Rett. They discussed their successful patient group collaboration and demonstrated how two patient groups can form a successful alliance, which benefits both rare disease communties. Their presentation was followed by Toni Mathieson from NPUK,who spoke of the success of LSD Collaborative, which was set up to advocate on behalf of patients and families with Lysosomal storage disorders in the UK. Rick rounded off the day by talking about the importance of collaboration agreements when looking to establish a professional relationship with another group.

On the third and final day of the workshop, it was time to discuss collaborating with medical professionals. We kicked off the day with an interactive session lead by clinical geneticist. Dr Melita Irving, where we tackled questions, such as‘How do you begin to capture the needs of your community and drive your own agenda?’ Melita’s session was followed by three lightning talks where we had the privilege of learning more about the different strategies patient organisations deploy when seeking to engage with clinicians. The workshop concluded with a talk from Emily Cutting at Ataxia UK, who presented us with advice on building medical and scientific advisory boards.