Improve Transition Care for Youth with Rare Diseases in Europe – ENCA Network
ENCA_network shared a post on LinkedIn:
“Are you a young person or caregiver living with a rare connective tissue disease? Help Improve Transition Care for Young People with Rare Connective Tissue Diseases!
The European Reference Network ERN ReCONNET is conducting a Europe-wide survey to understand how transition from paediatric to adult care can be improved for people affected by these rare diseases.
Take part here (available in 20 languages):
Your answers will help shape better support, smoother transitions, and more coordinated care across Europe.
Please share this with your community so that every voice can be heard!
Rare connective tissue diseases are:
Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc), Sjögren’s Syndrome (SS), Mixed Connective Tissue Disease (MCTD), Ehlers-Danlos Syndromes (EDS), Idiopathic Inflammatory Myopathies (IIM), Relapsing Polychondritis (RP), Antiphospholipid Syndrome (APS), IgG4-Related Disease (IgG4-RD), or Undifferentiated Connective Tissue Disease (UCTD)”
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