Are you a parent of a child with a rare medical condition?

3 mins read

Friday 8 July 2022

Could you help us improve our information, support and advice services for families like yours?

We’d love to hear what you think about our information, support and advice for families caring for a child with a rare condition,  what we could do to improve it and any gaps we need to fill.

Share your views with us at this focus group and you’ll help us provide better information and advice services for your family and other families raising a child with a rare condition.

We’re looking for 10 parent carers to join an online focus group, where together we’ll review some of our information about rare conditions.

By joining us you’ll be helping us make sure we’re supporting families with the advice and information they need and want.

The session will take place on Tuesday 19 July between 12:30-2:30pm OR Wednesday 20 July between 10am -12 via Zoom. We’ll ask you to provide your preferred date on the application form and provide details on how to join the meeting ahead of the session.

Who we’re looking for

Only parent carers caring for a child or young person aged 0-18 with a rare medical condition – this can be a diagnosed or undiagnosed condition.

You can apply to join this focus group by filling in this application form.

What you’ll do 

  • We’ll send you some information beforehand, which we’d like you to take a look at before the session. 
  • At the session, we’d like you to share your views and opinions on what you’ve read and on how you like to access information relating to your child’s needs. 
  • Participants will be paid for their time if they wish. 

How we’ll select parents

We want to ensure the focus group includes parents with range of experience and backgrounds including gender, ethnicity, and geographical location. If you have previously provided us with this information (for example if you were a member of our previous survey panel), then this may be used to ensure the group is representative.

What if I’m not selected for the focus group but still want to share my views? 

Throughout the year we run surveys about our information and advice services and we’d love you to take part. You can find out more about our surveys through our newsletters and joining our Facebook group.

How will my views and experiences be used? 

We want to be there for families with the information, support and advice they need in the way in which they need it.  As a parent with a child with a rare condition, your involvement in this focus group will help us to create content for our website, newsletters and our social media channels that better supports you and your family.