Living with, or caring for someone with, a rare condition brings unique emotional and practical challenges.
Rareminds are conducting this survey to better understand your experiences when seeking or accessing professional mental health support: what worked, what obstacles you faced, and where gaps exist.
We want to hear from everyone impacted by rare conditions - affected individuals, parents, carers, partners and family members.
We acknowledge how much invaluable informal and non-professional support happens in many other contexts, however, the focus of this survey is access to professional support services.
What we mean by 'Professional Mental Health and Psychological Support'
We intentionally use this broad term to include any professional service or group you have reached out to for emotional or psychological wellbeing. This includes counselling, psychotherapy and psychotherapists, psychiatrists, specialist health psychologists attached to hospitals and crisis services.
Data Privacy & Sensitivity
Participation in this survey is voluntary and anonymous. Your responses cannot be traced back to you.
We ask for certain demographic information (e.g., location, ethnicity, diagnosis) to help us identify inequalities in access across different communities and regions of the UK. You may skip any demographic question you do not feel comfortable answering.
Anonymised aggregated results and quotes will be used. We will not share any quotes or data which could accidentally identify someone (for example, if it is a very rare condition). Rareminds may use artificial intelligence (AI) tools to help analyse survey responses, for example to identify common themes in written answers. AI is used only to support our team. All findings are reviewed and checked by Rareminds staff before they are used or published. Your data is handled in line with UK GDPR and our privacy notice and is not used to train AI models.
You can find out more about how we protect your data in our Privacy Policy.
Please note this survey is only for people based in the UK. It should take approximately 10 minutes to complete and may work better on a phone.
