90 people from 34 countries across the globe gathered in Athens, Greece for a week of networking, dynamic discussions and workshops. This included the People with MS Forum, and MSIF’s Council and Board meetings.
People with MS Forum
Every two years, the People with MS Forum takes place in a different location around the world. It is the opportunity for people affected by MS to make their voices heard at the heart of the MSIF movement. This year, the Forum focused on well-being and quality of life with MS. We had an interactive session on the Interactive Progressive MS Alliance’s global research strategy for enhancing well-being for people affected by progressive MS. We also discussed the Brain Health Initiative and programmes to reduce social isolation among people with MS and family caregivers.
In a workshop, we developed proposals for an information resource on ageing with MS. MSIF’s International Resource Group will build on the discussions from this workshop to develop a resource in 2020. Additionally, throughout the Forum, we had mindfulness sessions to help us maximise our time together and be on top form!
MS organisations’ relations with healthcare industry
We discussed the next steps for the MSIF movement’s challenges in the relations between the pharmaceutical industry and MS organisations. This discussion followed a meeting with representatives from our member organisations and the healthcare industry, where we agreed to work together to explore compliance, funding, trust and branding. In Athens, we discussed what MS organisations want to see emerge from these groups and which potential platforms could be used to test our new approaches to improving MS organisation and industry relations.
Halfway through the MSIF movement’s strategy and ambitious plans
With 90 delegates from across the world, the meetings were an opportune moment to review where we are up to with the movement’s global strategy. During the Council and Board meetings, we explored the successes and challenges of our collaborations, and ways of improving how we work effectively as an international movement.
We also discussed the movement’s ambitious plans for improving access to treatments. In a workshop, we discussed the feasibility and impact of MSIF’s plans, exploring some of the steps we can take to achieve these ambitions.
…and much more
We explored the World MS Day strategy for 2020-2022, where we identified tools and resources to support MS organisations in planning, implementing and measuring their World MS Day campaigns. During the CEO Advisory Group meeting, we also discussed the Atlas of MS and the new people with MS survey, which is being introduced for the first time as part of the Atlas update. Finally, the winner of the Charcot Award, Professor Catherine Lubetzki, gave a very inspiring video talk about her award and her outstanding research into demyelination and remyelination in MS.