RARECARE PROJECT: Help Shape the Future of Rare Disease Care in England

   

 

We are inviting people living with rare conditions and/or their carers to take part in interviews and focus groups for the RareCare project. This research is part of an independent evaluation of England’s Rare Disease Framework and Action Plans.

We want to hear from you about what is working and what still needs to improve, especially around:

• Getting a diagnosis
• Coordination of care
• Access to treatments
• Awareness among healthcare professionals

Why your voice matters
We are working with peer researchers who have experience of rare conditions, either as someone with a rare condition or as a carer. We hope that talking with someone who also has lived experience will be helpful.

What’s involved?

• A 60–90-minute interview.
• Flexible timing, arranged around your availability.
• Online via Microsoft Teams (support provided if needed).
• You will receive a £25 payment from Alström Syndrome as a thank you for your time.

Sessions will be recorded, but you can choose whether your face is shown.
Recordings will be securely stored by Coventry University, then deleted after transcription.
You will be asked to complete a consent form and a short demographic form and will then be contacted by a researcher to arrange an interview.

 

Your Opinion Matters!

You can also have your views heard, via a survey.

The survey is anonymous, takes 20–30 minutes to complete, and your responses will provide the wider context for the project’s research findings.

Scan the QR code on the poster below or take the survey by following the link https://form.jotform.com/252324831142044

 

If you would like to discuss this further and/or receive a copy of the Participant Information Sheet, please contact:
Kerry Leeson-Beevers
Email: Kerry.leeson@alstrom.org.uk
Tel: 07716135940

Thank you, we look forward to hearing from you.

Further information about the RareCare project can be found using the link below:
Rare Care | Evaluating the UK Rare Disease Framework