MYELOMA PATIENTS EUROPE AISBL

Their core work

Myeloma Patients Europe is a Brussels-based patient advocacy organization focused exclusively on multiple myeloma, a blood cancer. They represent the patient voice in EU-funded research projects, contributing expertise on patient-reported outcomes, quality of life measurement, and real-world treatment experience. Their participation in clinical research consortia ensures that myeloma therapies — from CAR T-cell immunotherapies to personalized medicine tools — are evaluated through the lens of what actually matters to patients.

What they specialise in

How they've shifted over time

Their early H2020 involvement (2016) began with personalized medicine prediction tools for myeloma treatment (MMpredict). By 2018-2021, their scope expanded into advanced immunotherapy research (CARAMBA's CAR T-cell work) and international standardization of how patient outcomes are measured and analyzed (SISAQOL-IMI). The trajectory shows a shift from treatment-level validation toward shaping the broader frameworks and standards used to evaluate myeloma therapies across clinical trials.

Moving toward setting international standards for how patient outcomes are measured in cancer research, positioning them as a governance voice rather than just a consultation partner.

How they like to work

Exclusively a participant — they have never coordinated an H2020 project, which is consistent with their role as a patient organization providing the advocacy and lived-experience perspective that clinical research consortia need. With 48 unique partners across 16 countries, they connect into large, diverse consortia rather than small focused teams. Their value to a consortium is clear: they bring the patient dimension that reviewers and funders increasingly require.

Connected to 48 unique partners across 16 countries, reflecting participation in large pan-European health research consortia. Their Brussels base positions them well within the EU policy and advocacy ecosystem.

What sets them apart

As a disease-specific patient organization focused solely on myeloma, they offer something most research consortia cannot source internally: authentic patient perspective grounded in years of community engagement. Their involvement in both experimental therapy trials (CAR T-cells) and outcomes standardization (SISAQOL-IMI) means they can bridge the gap between what researchers develop and what patients actually experience. For consortium builders, they check the increasingly important "patient engagement" box with genuine expertise rather than token representation.

Highlights from their portfolio

• CARAMBA
  Largest funded project (EUR 115,625 to MPE) developing an advanced SLAMF7-targeted CAR T-cell therapy for myeloma using Sleeping Beauty gene transfer — a genuinely frontier immunotherapy approach.
• SISAQOL-IMI
  An IMI (Innovative Medicines Initiative) project establishing international standards for analyzing patient-reported outcomes — this is standards-setting work with long-term influence on how clinical trials measure success.