Global Genes and admedicum Launch Strategic Collaboration to Advance Patient-Driven Research

Global Genes and admedicum Launch Strategic Collaboration to Advance Patient-Driven Research

AMSTERDAM, NL and WASHINGTON, D.C. October 28, 2025 – Global Genes, a leading patient advocacy nonprofit serving the rare disease community, and admedicum Patient Driven Solutions, an expert network specialized in patient engagement and stakeholder advocacy, are pleased to announce the initiation of a strategic collaboration.

This partnership unites two organizations dedicated to giving patients an active voice in research, data generation, and collaboration with healthcare stakeholders.

At the heart of this partnership lies the innovative RARE-X platform—Global Genes’ initiative to collect, structure, and activate patient-owned data for research and drug development. Through this collaboration, admedicum will contribute its extensive experience in co-creating patient engagement strategies and facilitating multi-stakeholder collaboration to help unlock the platform’s full scientific and therapeutic acceleration potential for patient relevant research. admedicum is enabling patient-driven innovation and supports impactful development and access to innovative health technologies. Today, it primarily operates across Europe, in the USA, and in the Asia-Pacific regions.

The collaboration aims to:

• Maximize the impact of RARE-X’s research-grade data to support more efficient and meaningful development of treatments.
• Enable data-driven collaboration between industry, patient organisations, and researchers through tailored services like advisory boards, focus groups, and insights research.
• Facilitate access and inclusion, particularly in underserved or ultra-rare disease communities where both Global Genes and admedicum have strong networks and a proven track record.

This collaboration is a first step toward what both organizations envision as a long-term strategic alliance that will support a more inclusive, efficient, and patient-driven ecosystem for rare disease research and development.

The RARE-X platform was launched to enable patient communities to collect robust, high quality data to characterize rare diseases and accelerate research on treatments. Today, data on over 85 diseases is being collected in the RARE-X registry, in partnership with 130 patient advocacy groups.

“Patient driven research is foundational to progress in rare disease,” said Charlene Son Rigby, CEO of Global Genes. “We welcome this partnership with admedicum to scale the impact of the RARE-X platform and accelerate urgently needed rare disease therapy development.”

Philipp von Gallwitz and Dr. Andreas Reimann, Co-Founders and Managing Partners, admedicum comment: “By combining Global Genes’ scientific vision, data infrastructure and patient advocacy expertise with admedicum’s operational know-how and deep roots in patient communities and the industry, we are creating a powerful foundation to accelerate solutions that truly matter to patients.”

As the collaboration unfolds, both organizations will work closely with life sciences companies, patient advocacy organisations, and other stakeholders to validate the model and assess next steps. Stay tuned for updates as we build a future where patients help lead the way in research and therapeutic innovation.

About Global Genes

Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients, their families and disease communities globally. For nearly two decades, we’ve equipped rare disease patients and advocates with tools, training and support – to connect patients with needed resources, activate communities and advance research. Global Genes serves the more than 400 million people around the globe, and the nearly one in 10 Americans affected by rare diseases. With over 800 patient advocacy group members in our Global Advocacy Alliance, we work with patient advocates, industry partners and academia to build vital ecosystems to progress critical work in rare disease. Learn more at http://www.globalgenes.org.

About RARE-X

RARE-X is the research program of Global Genes. RARE-X provides a highly scalable approach for rare disease data collection, delivered in partnership with patient advocacy groups. RARE-X’s global footprint includes more than 85 disorders from patients in over 90 countries. RARE-X’s innovative, collaborative model is patient-driven with research grade data, and is designed to accelerate research and advance urgently needed treatments. Learn more at http://www.globalgenes.org/about-us/about-rare-x/.

About admedicum®

admedicum® bridges the gap between healthcare companies and patients, fostering the co-creation of meaningful, patient-driven solutions catering both parties throughout the entire product and service lifecycle, from early development, across clinical development to market/patient access and commercialization.

Our core expertise is in patient engagement during development, driving patient-driven innovation and facilitating impactful development and access to health technologies by multi-stakeholder advocacy. We offer specialized patient insights research, clinical trial engagement services with a focus on rare diseases, measuring patient experience through clinical trial interviews, multi-stakeholder alliances, HTA training, and patient access preparation.

Drawing on the insights from patients, patient organizations, and industry experts, our experienced team uniquely understands the nuances of patient groups and industry dynamics. We integrate patient benefits with corporate objectives & success, consistently delivering measurable and sustainable outcomes.

Committed to transparency, (partner) independence, and respect for human dignity, we prioritize genuine collaboration for long-term, sustainable benefits and the collective good.

admedicum, originated in Europe, and primarily operates across Europe (including presence in Germany, France, Italy, Spain & UK), in the USA, and in the Asia-Pacific regions.

For media inquiries, please contact:

Global Genes: [email protected]

admedicum: [email protected]