On March 14th, Brussels hosted the inaugural cluster meeting of newly EU-funded research projects focused on Rare Diseases, organized by the European Health and Digital Executive Agency (HaDEA). This event brought together 11 projects, including DREAMS, all aimed at addressing rare diseases, which collectively affect millions of individuals across Europe.
These projects, supported by the European Commission’s commitment to advancing potential treatments, represent a collaborative effort to tackle conditions impacting up to 36 million people in Europe. Among them are EURAS, GEREMY, MAGIC, NANEMIAR, RESTORE VISION, SIMPATHIC, TheRaCIL, LightCure, INVENTS, ERAMET, and DREAMS initiatives.
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Forging collaborative pathways on Rare Diseases
The cluster meeting aimed to provide an overview of EU policies on rare diseases research and innovation, emphasizing initiatives such as the International Rare Diseases Research Consortium (IRDiRC). Its primary focus was on fostering collaboration among projects to optimize synergies and impact.
Participants engaged in discussions on common interests, identified potential areas for collaboration, and devised strategies for effective cluster organization. This included exchanging ideas on the synergies between projects and EU initiatives, promoting a holistic approach to rare diseases research and treatment.
A notable takeaway was the significant involvement of patient organizations in various projects, such as DREAMS, highlighting the pivotal role patients can play in research endeavours.
To ensure streamlined progress, the meeting underscored the importance of establishing early and pertinent connections with regulatory authorities. Presentations by the European Medicines Agency (EMA) and the European Commission on the legislative framework were well-received, sparking extensive discussions and emphasizing the critical role of the regulatory landscape in advancing rare diseases research and innovative approaches.
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DREAMS makes its mark in inaugural public presentations
Representatives from the DREAMS project, including Dr. Xavier Nissan (CECS/I-Stem), Ségolène Marin (Kantify), and Laura Sesma (Zabala Innovation Consulting), attended the session in Brussels. Dr. Xavier Nissan expressed gratitude for the Commission’s support and emphasized the importance of such events in raising awareness and establishing synergies among projects.
“Such events play a crucial role in spotlighting our commitment to driving change in the rare disease domain and forging partnerships among projects with aligned methodologies and approaches,”
Dr Xavier Nissan, CECS/I-Stem
Following the project’s kickoff meeting, DREAMS took the opportunity to showcase its innovative approach at two public events featuring specialists in rare disease research. The EU-funded inaugural clustering event, along with the first #iDR24 conference in Barcelona on March 6-7, 2024, co-organized by REMEDi4ALL, Beacon, and MeRIT, provided platforms for introducing the initiative and its objective of finding novel and shared therapies capable of treating multiple rare Neuromuscular Disorders (NMDs) for which there is currently no therapy.
Ségolène Marin, CEO of Kantify and associated partner of DREAMS, highlighted the project’s innovative approach, leveraging Artificial Intelligence to expedite research timelines and overcome obstacles in exploring potential treatments for neuromuscular diseases, such as high research costs and lengthy timelines.
