Patients and patient organisations

– Collaborate with us

Your voice shapes our research

The Centre is co-designed with patients, carers, and advocacy groups to ensure that lived experience drives everything we do-from identifying research priorities to developing new therapies. 

Ways you can collaborate

Enquire about our new Lived Experience Advisory Panel (LEAP) 

Help shape our values, priorities, and progress as a patient or patient organisation representative. 

Share your experience 

Take part in our qualitative research to help us better understand the realities of diagnosis, treatment, and daily life with RRDs.

    Participate in research 

    Join our registry and consent to be contacted about research opportunities relevant to your condition.

      Access resources 

      Benefit from educational materials and webinars developed with and for patients and carers. 

      Raise awareness 

      Partner with us to advocate for increased understanding and funding for rare respiratory diseases. 

      Inclusion and equity matter to us 

      We’re actively working to connect with underrepresented communities and disadvantaged groups – using both in-person and digital engagement approaches.