Executive Summary
The meeting organized in Frankfurt, October 24th-26th 2024, brought together representatives from 9 MDS member organizations (9 countries), representatives from 3 pharmaceutical companies, as well as most of the Steering Committee members.
The MDS Alliance (MDSA) is a global network organization of 41 patient groups from around the world who support the reach of the program by sharing the MDSA resources in their local settings. Its mission is to ensure that all MDS patients, regardless of their location or situation, have access to the best multiprofessional care. The MDSA had previously had several virtual meetings with its members, but this global summit was the first face-to-face member meeting since the creation of the organization in 2012. The meeting also marked a major milestone, as the organization changes its footing from being an informal network to becoming a legal entity, registered in the Netherlands.
Many issues were discussed during the meeting, among which were the following:
Inconsistency of Care and Unmet Needs – Due to the myelodysplastic syndrome (MDS) complexity of diagnosis, treatments and outcomes, there is a consistent need for higher quality and accessible patient care and patient-friendly information. This is coupled with a need for greater psychological and financial support for patients, as well as addressing unmet needs in different cultural contexts and markets.
Patient Empowerment – Providing patients with higher quality resources and ensuring communication channels are available for both information and questions. Together with ensuring patient voices are heard in research, treatment development and policy decisions.
Creating more Productive Collaboration between All Parties Involved – The need for improved engagement between patient advocates, pharmaceutical companies, and public health organizations has never been greater. These links could offer significant benefits to patients through improved access to clinical trials by enhancing patient involvement in their design and improved candidate availability. The importance of transparent and open communication between all parties involved was repeatedly emphasised during the meeting in Frankfurt. The pharmaceutical company representatives confirmed their commitment to keep improving patient communication.
Creation of Evidence-based Data – The Global Patients Survey, implemented every 2 years, positions the MDSA as an evidence-based data creator. Scientific papers, issued from the 2024 survey, should be published in medical journals within the next 12 months.
Knowledge Creation and Dissemination – A new organization needs a new website. The aim is to take the opportunity to address various shortcomings and position the website as a robust, user-friendly focus for engaging with patients and other stakeholders.
Strengthening of the MDSA Network – With the aim of broadening representation, it becomes crucial to reach out to new members, especially in Asia and Africa. A short-term goal is to create regional networks in order to better address local needs.
MDSA Legal Identity – Since its creation, the MDSA has been an informal network, relying on registered organizations to manage its financial components. To remedy this lack of independence, the MDSA will be registered in the Netherlands as a foundation by the end of November, 2024. This major legal move was presented and agreed upon by the MDSA members present.
Thank you to the funders of the MDS Alliance Global Summit 2024
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