lunes, 25 de mayo de 2026
EURORDIS Paper: Importance of Psychological Support for Living Well with a Rare Condition April 2026
https://www.eurordis.org/publications/eurordis-report-importance-of-psychological-support-for-living-well-with-a-rare-condition/
This latest literature review published by EURORDIS explores the importance of psychosocial support for people living with a rare disease, calling for more holistic, multidisciplinary care models with mental health support embedded throughout care pathways. A companion literature review examines the specific psychological needs of people living with a rare condition.
Claudia Fuchs: Multi-omics and the future of rare disease research and healthcare May 2026
https://www.eurordis.org/claudia-fuchs-on-multi-omics/
You may already have heard about multi-omics and how it is transforming research across many different fields. But what does it mean for rare diseases – and why does it matter for people living with them?
Multi-omics is opening up exciting new possibilities for understanding, diagnosing, and treating rare diseases. By bringing together different layers of biological and environmental information, it could help researchers and clinicians see a fuller picture of health and disease – and, ultimately, change the way rare disease care is delivered.
Translating multi-omics into healthcare: requisites for scalable and equitable implementation May 2026
https://www.eurordis.org/publications/translating-multi-omics-into-healthcare-requisites-for-scalable-and-equitable-implementation/
A new paper published in Human Genomics explores the requirements needed to ensure multi-omics can be implemented in healthcare systems in a scalable and equitable way. It further examines how it can improve diagnosis, personalised care and research, while addressing challenges related to governance, data sharing and equitable access to support its integration into healthcare systems across Europe.
This paper was co-authored by our Drug Repurposing Projects Senior Manager Claudia Fuchs, who has also this week written a EURORDIS Staff Blog on the subject. "Multi-omics is opening up exciting new possibilities for understanding, diagnosing, and treating rare diseases," writes Claudia.
Europe can already lead in rare diseases – it just needs a plan
https://www.theparliamentmagazine.eu/partner/article/europe-can-already-lead-in-rare-diseases-it-just-needs-a-plan
The Parliament magazine, an official Media Partner of ECRD 2026, has published an article by our Head of Policy & Public Affairs Valentina Bottarelli, arguing for a dedicated EU Action Plan for Rare Diseases. Valentina highlights how Europe already has the expertise, innovation capacity and collaborative networks to become a global leader in rare disease healthcare, but adds that stronger coordination and political commitment are essential to turn progress into meaningful change for patients.
Wearable robot boosts strength of children with spinal muscular atrophy The device helps muscle recovery in those receiving gene therapy for the rare neuromuscular condition. By Liam Drew
https://www.nature.com/articles/d41586-026-01573-x?utm_source=Live+Audience&utm_campaign=5aa384d92f-nature-briefing-daily-20260521&utm_medium=email&utm_term=0_-33f35e09ea-50432164
A wearable robot weighing just under one kilogram improves knee function in children living with spinal muscular atrophy (SMA), according to research published in Nature today1.
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