World Scleroderma Congress: winning a challenge together
The World Scleroderma Foundation decided to dedicate a congress to this rare disease and AIM Group has been the preferred partner since the earliest stages. Discover how we designed a successful world congress and achieved great results for five editions in a row.
Scleroderma is a rare and serious disease and for a long time has only been on the agenda of Rheumatology Congresses. In 2010 a small group of specialised professors decided to dedicate an entire congress to all the issues, medical research and practices related exclusively to this complex disease. It was a challenge because rare diseases attract less attention and funds. It meant building the entire project from scratch as there is not any other similar experience dedicated to Scleroderma. That’s why these specialised doctors, together with the World Scleroderma Foundation, involved the networks of the European League Against Rheumatism EULAR, the European Rheumatology Association, the European research centres EUSTAR, the Federation of European Scleroderma patients associations (FESCA) and AIM Group International to create a solid work group and organise the first world congress.
AIM Group took the challenge and, thanks to its active relationships with the rheumatology community and the pharmaceutical sector, put its experience, network and knowledge towards making successful events. The first was held in 2010 in Florence with more than 1.400 participants, and then in Madrid in 2012, Rome in 2014, Lisbon in 2016, and, recently, in Bordeaux, with attendees from 60 countries. “The congress organisation has always been entrusted to AIM Group due to the strong partnership which has allowed us to offer a 360-degree consulting service. We find the best solutions in regard to the choice of the destination, for set-up and technical equipment, but overall regarding long-term agreements with sponsors, fundraising activities, patient care and all the other needs,” explains Francesca Manzani, head of AIM Group Florence Office.
Two parallel congresses
One of the main features of the 3-days congress is that it gathers not only physicians, health professionals and researchers but also patients affected by this impactful disease. “As regard to content, the connection between physicians and patients makes this congress really original and particularly rich in human empathy. The presence of patients over the years has contributed to maintaining a greater attention to their needs and helping in making improvements to their daily lives. It is embracing a patient-oriented point of view,” says Manzani. The patients’ involvement means a different approach to the organisation of the congress: it means that two parallel congresses have to be realised, as physicians and patients celebrate their own plenary sessions and seminars but including some shared moments. It requires also a particular attention to ethics standards and a strict compliance.
Effective knowledge sharing
Results have always been extremely satisfying. These congresses have contributed to increasing knowledge of scleroderma throughout the world. The number of countries represented has grown by 10% as well as the number of abstracts received. Furthermore, new educational formats have been introduced through the years, helping to make knowledge sharing more effective, such as interactive sessions, Meet the Experts classes or pre-congress workshops with hands-on sessions.
Leaving a Legacy
At the last edition in Bordeaux, a new fundraising activity was promoted with the aim of leaving a legacy to the World Scleroderma Foundation. The Foundation is not only initiating and supporting research on scleroderma but is also committed in improving the quality of life for scleroderma sufferers and their families. A charity dinner was organised, involving local communities and partners. It was a unique opportunity to share a pleasant moment and actively take part in an auction which supported the launch of a worldwide research programme.
A long-term vision
“Designing and realising an educational congress for a rare disease needs a different approach in terms of commitment and teamwork. From the first edition we collaborated with the committee, researchers, patient communities and sponsors: the dialogue between all the different stakeholders is even more important in this case and all our team was completely engaged in finding new initiatives to provide a solid future to this event” ends Francesca Manzani.