The ERN ReCONNET Transition of Care Task Force would like your support for a European survey focused on transitional care for people living with rare connective tissue diseases (rCTDs).
The transition from paediatric to adult healthcare is a critical and often challenging phase for young people with rare diseases and their families. To better understand the real-life experiences, needs, and expectations of patients and caregivers, ERN ReCONNET is conducting a survey across Europe. The results will directly contribute to developing a more effective, coordinated, and patient-centered model of transitional care.
Who can participate?
Patients living with a rare connective tissue disease and/or parents and caregivers
The diseases covered include:
Antiphospholipid Syndrome (APS), Ehlers-Danlos Syndromes (EDS), Idiopathic Inflammatory Myopathies (IIM), IgG4-Related Diseases (IgG4-RD), Mixed Connective Tissue Diseases (MCTD), Relapsing Polychondritis (RP), Sjögren’s Disease (SjD), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc), and Undifferentiated Connective Tissue Diseases (UCTD).