Network Development & Peer Learning
Connecting communities is at the heart of our work
We believe that together we are stronger, sharing our knowledge, experience and passion to make a difference.
We enjoy developing strong clinical & patient partnership, empowering patients to be equal partners in identifying research and healthcare priorities, setting clinical standards, healthcare pathways and reporting outcomes of care.
Focusing on fostering positive relationships in our networks and creating a culture of learning, being clinically curious about the rare diseases we face and drawing on all information and feedback available, we have built networks that are world-leader for healthcare and research.