Governance & Oversight

If you are interested in joining our Lived Experience or Professional Advisory Panels please email

NEW SURVEY

Have you ever tried to access professional mental health support?

 If so, we want to hear about your experiences - what worked, what barriers did you face, what are the gaps? We want to hear from from everyone impacted by rare conditions: affected individuals, parents, carers, partners and family members. You can complete the survey here: