Publications

Together for Rare Diseases (2021-2024)

Join4ATMP (2024-27)

RARE IMPACT (2020-21)

Mental Health Partnership Network (2023-ongoing)

EU Joint Action(s): under RD-Action (2015-18)

European Reference Networks (2015-2024)

Global Health for Rare Diseases Through Primary Care

Together4RD position statement on collaboration between European reference networks and industry

The Importance of Psychological Support for Parents and Caregivers of Children with a Rare Disease at Diagnosis

Enhancing the value of clinical networks for Rare Diseases

Designing rare disease care pathways in the Republic of Ireland – a co-operative model

Patient Journey Experiences May Contribute to Improve Healthcare for Patients with Rare Endocrine Diseases

Our Greatest Untapped Resource – Our Patients

Patient Journeys – improving care by patient involvement

Rare disease healthcare pathways

Network Development & Peer Learning

Evidence Informed Care & Medicine

Primary Bone Sarcoma

Neurofibromatosis

Severe Combined Immune Deficiency

Lysosomal Storage Disorders

Cranio Facial Surgery