Why I am fortunate to still be learning lessons in RARE

Written by Gavin Jones, Global Advisor, Rare Disease on Wednesday 6th October 2021

In late September 2021, Gavin Jones (Global Advisor, Rare Disease) had the honor of chairing a symposium for Tin Soldiers at the Paediatric Rheumatology European Society (PReS) congress. He writes briefly on the experience and why we must all remain open to learning lessons and evolving our approach to deliver better outcomes for people living with RARE.

"I had already been working with the fantastic Tin Soldiers organization, as the co-founders had kindly agreed to take part in a recent panel discussion. To subsequently receive an invite to chair their prestigious symposium at PReS was an exciting if nerve-wracking prospect! The Tin Soldiers are a collective of advocates, activists, and clinicians aiming to accelerate diagnosis of fibrodysplasia ossificans progressiva (FOP) and other musculoskeletal conditions; they also help to put diagnosed patients into appropriate care pathways. The organization has been making an impact across the globe, and this symposium aimed to bring the key players together to discuss the lessons learnt and how these could be applied to other rare and not-so-rare conditions.

As always with the Tin Soldiers team, the level of production and professionalism on show was superb, which certainly put the pressure on. However, working with the team and clinical experts was a brilliant experience as they match their significant expertise with humility. They have demonstrated that anything is possible in rare disease if you have dedication, communication, and collaboration. Through storytelling, they have connected and encouraged individuals to play their part in improving outcomes for people living with rare disease. What they have done so well is mobilizing change one person at a time and thereby building a swell of recruits to their very own RARE army, which includes families, clinicians, policy makers, and even the first lady of Brazil!

The symposium was made possible by generous donations from the International Fibrodysplasia Ossificans Progressiva Association, Ipsen, Blink Pictures, and Radiant Hope, which Tin Soldiers were very grateful for. There were a few technical gremlins that converted the prepared event into a more free-flowing discussion, but there was still great input and feedback from the audience. PReS have been very good in getting behind the initiative, and I am delighted to say that the intended session is now open access for anyone who wants to watch it. I strongly recommend you take a look, as it’s an inspiring journey that provides a lot of insight that can be applied to many rare diseases. I welcome every conversation about RARE as it takes my knowledge that little bit further, and this symposium was certainly no exception!"


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